This research is driven by patient- and family-identified needs to support the quality of life and wellbeing of mothers of pediatric heart transplant recipients. It leverages Mindfulness-Based Stress Reduction (MBSR), delivered at an ecological retreat, as an innovative intervention to meaningfully address the complexities of caregiving and caregiver burden. A mixed-methods design will be employed to examine potential changes in maternal coping styles, distress tolerance, quality of life and perceived social support following the intervention – a MBSR retreat. The retreat will be comprised of mindfulness exercises such as circle sharing, deep relaxation, yoga and walking meditation. Guided by the experiential expertise of our patient partner, Joanna Mitchell, this research places a strong emphasis on patient- and family-centred care, targeting the intersection of maternal wellbeing and child health outcomes within pediatric transplantation.
Joanna Mitchell is the mother to 16-year-old Ryley who received a heart transplant at 7 months of age. Soon after Ryley’s transplant, the Mitchell Family became involved as volunteers with the Trillium Gift of Life Network to encourage others to consider organ donation by sharing Ryley’s story. Joanna and Ryley were presented with the TGLN Board of Directors Champion Award in 2017 for their contribution to raising awareness for organ donation.
When Ryley was 5, she participated in her first Canadian Transplant Games and the family became involved with the Canadian Transplant Association. With the CTA, Joanna has helped to organize various events to promote both organ donation and healthy active living after transplantation. Joanna has also worked as a parent liaison to bring a pediatric and family perspective to the transplant games. She encourages connections of transplant families by facilitating various social media groups and informal mentorship.
Joanna became a patient caregiver partner with Canadian Donation and Transplantation Research Program more recently with a focus on projects related to pediatrics and the mental health of not only the transplant patient but the family as a whole.
Dr. Samantha J. Anthony is a Health Clinician Scientist in the Child Health Evaluative Sciences Program of the Research Institute at the Hospital for Sick Children. She has nearly 20 years of experience in the SickKids Transplant and Regenerative Medicine Centre as a Social Worker and is an Assistant Professor in the Factor-Inwentash Faculty of Social Work at the University of Toronto. Dr. Anthony is also an Investigator with the Canadian Donation and Transplantation Research Program.
Dr. Anthony has been recognized for her dedication to clinical practice and the application of research for improved patient outcomes. Her program of research centres on establishing an evidence-based foundation for successful psychosocial adaptation and enhanced quality of life for individuals with chronic disease, with a specific focus on pediatric solid-organ transplantation. Dr. Anthony has received national academic scholarships and has obtained competitive grants and research awards, including funding from Health Canada, CIHR, Canadian Child Health Clinician Scientist Program, Enduring Hearts, Kidney Foundation of Canada and The International Society for Heart and Lung Transplantation.
Psychosocial assessments are a required component of a comprehensive transplant work-up. One aspect of this assessment is determining the breadth and depth of a patient’s support system. The transplant team, often the social worker, will provide direction to the support person about expectations of the healthcare team pre, peri and post transplant. While recommendations about resources for support people are often made, there is a paucity of support for caregivers, as the focus is primarily on the patient. There is a need for more funding and resources for caregivers of transplant patients, as they are a vital component to transplant success.
Dee Miner has both a Bachelor’s and a Master’s degree in clinical social work from the University of Calgary. She has been practicing medical social work with Alberta Health Services for 18 years. Her last 14 years have been as the Liver and Lungtransplant social worker for the Southern Alberta Transplant Program at Foothills Hospital in Calgary. In addition to supporting patients both pre and post transplant, she is responsible for completing the psychosocial assessments prior to transplant listing. To date her research has been focused on teaching coping skills to pre-transplant patients.
Janet Fast is a family and consumer economist and Professor in the Department of Human Ecology at the University of Alberta and is Co-Director of the Research on Aging, Policies and Practice program. Dr. Fast works to create and transfer knowledge, to engage with public, government and other user groups, and to work at the interfaces among them. Her research focuses the economics of aging, the paid and unpaid care of family members and the capacity of assistive technologies to address the consequences family care. Her research addresses family, labour, health and continuing care policy issues, and she is often called upon to consult with or advise government policy-makers and NGOs on policy related to caregiving and workplace supports.
Sandy Sereda, is an experienced not-for-profit leader who currently serves as Executive Director of Caregivers Alberta where she champions the province’sone million caregivers. Sandy has had a rich and varied career in the not-for-profit sector with a focus on organizational management. She has a passion for mission-driven organizations having served previously with TheMustard Seed and The Lung Association, Alberta and NWT among others.
As a caregiver for most of her life, Sandy has a deep understanding of the joys and challenges associated with caregiving. She has been involved in scores of research projects, provincial health initiatives and national forums, bringing a broad understanding of the scope of issues impacting caregivers and a collaborative spirit to advance “caregiver friendly” health and social care.
Sandy has a Bachelor of Fine Arts degree from the University of Victoria and also studied Arts Administration at MacEwan University.
Navigating the organ donation and transplantation (ODT) system in Canada can be complex and confusing for people on a transplant journey. This qualitative study embraces the power of lived experience to guide and inform a truly patient-driven project in which research priorities have been defined by patients, families and donors. The online survey and focus groups central to the project were co-designed with patient research partners using an extensive iterative approach. Engaging patients from across Canada at every step of the research process is yielding a better understanding of the lived experiences of those on a transplant journey and will be instrumental in developing patient-led and patient-focused recommendations for long term improvements to the ODT system.
Carrie Thibodeau is serving as project lead for a qualitative study called Improving Engagement and EmpoweringPatients on their Transplant Journey. Her educational background is in the fields of applied health sciences and communications, and the focus of her professional career has been on kidney health.
She has worked closely with both patients and medical professionals for many years, and she has collaborated on multiple projects with the Kidney Foundation of Canada. On a personal level, Carrie has a close family connection to the renal and transplant communities. Her youngest uncle (and de facto big brother) is a three-time kidney transplant recipient and is now undergoing hemodialysis. His experiences have had a profound impact on Carrie both personally and professionally. This project has been an opportunity to be part of a team responsible for ensuring that patients’ lived experiences are central to the decisions being made about how best to manage organ donation and transplantation in Canada.
Manuel Escoto joins us from Edmonton, Alberta. He completed his Master of Public Health from the University of Alberta and has received training in patient-oriented research through the University of Calgary’s PACER (Patient and Community Engagement Research) Program. He is the Patient, Family, and Donor Partnerships & Education Manager with the Canadian Donation and Transplantation Research Program. In this role, Manuel builds relationships patient partners with investigators and strengthens capacity among CDTRP patient partners.
As a kidney transplant recipient, Manuel has been a patient partner in various initiatives, including collaboration with the CAN-SOLVE CKD Network, The Kidney Foundation, Alberta Health Services, and other project focused on the health and well-being of kidney and transplant recipients.
Marie-Chantal Fortin’s bio
Marie-Chantal Fortin, M.D., Ph.D., F.R.C.P.(c) is a transplant nephrologist at the Centre hospitalier de l’Université de Montréal (CHUM), a researcher at the Research Center of the CHUM and a professor at the Faculty of Medicine of the Université de Montréal. She received her medical degree from the Université de Sherbrooke. She completed her nephrology residency at the Université de Montréal. She has completed a PhD in bioethics in 2008 at the Université de Montréal.
She is a researcher within the Canadian Donation and Transplantation Research Program (CDTRP) and the Theme 1 Academic Co-Lead. Her research interests are related to transplantation ethics and patient and researcher partnership in research and clinical care. She is a member of the ethics committee of Transplant Québec, the Canadian Blood Services and the Collège des médecins du Québec. Finally, she is also a research scholar of the FRQS.
One of the goals of The World Transplant Games Federation is to support full rehabilitation of transplant recipients through promoting physical activity. As part of this goal, an international research initiative has been launched which seeks to connect researchers from across the globe and provide assistance through various activities. In this talk, we will discuss our plans for how the research initiative will facilitate the engagement of patients, family and donors and what we are learning in the process.
Anders Billström Gareth Wiltshire
Dr. Wall is Professor Emeritus of Surgery at Western University. He established liver transplantation at London Health Sciences Center where he served as Director of the Multi-Organ Transplant Program from 1997 to 2007. He was a founding member and President of the International Liver Transplantation Society. Dr. Wall took the medical lead in developing and establishing the curriculum onelifemanygifts to educate secondary school students in Ontario about organ donation and transplantation.
Bernadine Boulet is the mother of Logan Boulet. Logan made an incredible difference in the registration of Organ Donors following his donations to make the lives of 6 people better after passing from a brain injury sustained in the Humboldt Bronco bus crash in 2018. From this, the Logan Boulet Effect and Green Shirt Day grew, which made the topic of organ donation easier to broach. Bernadine (Bernie) teaches Grade 2 in Lethbridge, AB and continues to be an advocate of sharing about organ donation and transplantation with students in elementary schools. She works to make these topics about helping others and for families to have effortless, straightforward conversations together.
Working in an Alberta elementary school is not a place where the topics of organ donation and transplantation are common or part of the curriculum, but Bernie is finding ways to make these topics unworried conversations and discussions. Her personal experience and advocacy have led her elementary school (and many others) to share these topics in a safe, open ways with these young students.
This presentation draws on an ongoing qualitative study, which investigates why rates of Living Donor Kidney Transplantation (LDKT) vary widely between Canadian provinces. By understanding and comparing the provincial systems in BC, ON and QC, we hope to help improve LDKT in provinces with comparatively lower rates. During the presentation, we will discuss the some of the problems faced by patients, families and donors as they navigate the health system to pursue LDKT. We will discuss our partnership and shared goals as a research team, as well as some of our findings so far.
Anna Horton is a qualitative researcher at the research institute of the McGill University Health Centre. Following an undergraduate degree in Social Anthropology at Edinburgh university she became interested in medical anthropology and the application of anthropological frameworks to study of healthcare policies, which she pursued during an MSC in Family Medicine at McGill University. Now, she applies her background in social sciences to the field of transplant nephrology. Her current work investigates differences in how Canadian provinces organize and govern Living Donor Kidney Transplantation (LDKT), in order to better understand and address disparate rates of LDKT across the county.
Sylvie Charbonneau is a retired entrepreneur, with more that 30 years of experience in change management. She is also the mom of 2 and the grandma of 2. In 2012 her son needed a kidney transplant, and she decided to become a living donor. After the transplant, she wanted to give
back and got involved as a volunteer for the Quebec branch of the Kidney Foundation. Since then, she served on the Board of Directors of the Kidney Foundation, for several year, in different roles. She is currently President of the National Board. She is also involved in different committees as a representative of living donors and advocating for organ donation. She hopes to use her professional experience, combined with her personal experience to change the world, on organ at a time.
Enjoy this presentation describing the My Kidneys My Health website that is based on preferences of people with CKD and their caregiver to support CKD self-management.
Dr. Maoliosa (Mo) Donald is a clinician-researcher with the Division of Nephrology at the University of Calgary, Cumming School of Medicine. She completed her PhD in Health Sciences and has been a Physical Therapist since 1992. Mo is passionate about interventions that support person-centered care, and innovations that address the evidence-practice gap for patients with chronic kidney disease. Her current work involves understanding the needs of individuals with early chronic kidney disease and investigating optimal strategies for supporting them and their families.
Dwight Sparkes lives in St John’s and works as a Senior Application Analyst with Newfoundland & Labrador Centre for Health Information. In 2014, Dwight was diagnosed with chronic tubulo-interstitial nephritis, caused by drug interaction while undergoing treatment for his vasculitis. Today Dwight’s vasculitis is in remission but lives with the effects of Chronic Kidney Disease every day. Dwight joined Can-SOLVE CKD as patient partner in 2017 as way to give back and hopefully be able to contribute to improving the lives of people living with CKD.
Dr. Rahul Mainra is a Transplant Nephrologist working in the Division ofNephrology at St. Paul’s Hospital in Saskatoon, Saskatchewan and Professor of Medicine at the University of Saskatchewan. He completed his medical training and residency in Saskatoon followed by a Nephrology fellowship at Western University in London, Ontario. Following this, he spent a year in Sydney, Australia completing a transplant fellowship along with a Masters in Medicine at the University of Sydney Department of Clinical Epidemiology. He returned to Saskatoon in 2008 to join the Saskatchewan Transplant Program in his current role. Rahul is active in the undergraduate medical program at the University of Saskatchewan and is the director of UGME for the Department of Medicine. Nationally, he is chair of the Living Donor Working Group for the ODTC and the Kidney Transplant Advisory Committee for CBS.
Carson Barber joins us from Saskatoon, Saskatchewan. She has been on dialysis for over 2.5 years and may be a candidate for a less-than-ideal transplant. Today, she joins us to share her perspectives on less than ideal transplants and what it would mean for her and other patients.
Lynne Feehan, is a researcher and the Knowledge Translation lead at the BC SUPPORT Unit, whose passion is supporting patient-partners and health researchers to learn how to collaborate and do meaningful partner engagement across health research activities. She is also a physiotherapist and clinical associate professor in the Department of Physical Therapy at UBC with many years working in the health system. Her lived experience as a researcher and clinician have helped Lynne learn how to navigate the opportunities and challenges when conducting, or using findings from, health research in health care and service delivery settings.
Shelby Gielen is originally from a small town in the BC Kootenays, received her first liver transplant at the age of 14, and her second liver transplant at the age of 27. Throughout her youth and adult life Shelby has been heavily involved in the transplant community as a mentor and volunteer and has been a two-time participant and multiple medal winner in the Canadian Transplant Games. For the past two years Shelby has been active as a Patient Partner with the Transplant Research Foundation of BC and the Vancouver Coastal Health Research Institute, with a keen understanding of the importance research plays in the success of future transplant journeys.
Earl Howell is the “The retired guy” and a liver transplant recipient of twenty-four years. My liver transplant was due to primary sclerosing cholangitis, a disease I was diagnosed with at 35 years old.
“I joined BC Transplant as an Organ Donation Specialist in 2018 and in 2020,I took on the role of In-Hospital Coordinator for Fraser Health Authority. Prior to that, my entire career had been in respiratory therapy. I was a severe asthmatic growing up and found comfort from the respiratory therapists and nurses who were able to help me breathe. This influence led me to flourish in a career as a respiratory therapist in Ontario and BC since 2008.
As a respiratory therapist, we are a big part of end of life care in the ICU. My experiences with seeing organ donation as a silver lining for families and for patients receiving a second chance at life, is what inspired me to learn more about career opportunities with BC Transplant.
Personally in 2018, I was diagnosed with a condition called keratoconus which affected my ability to see. In 2019 I almost lost complete vision in my left eye and was waitlisted for a cornea transplant. A few months later, I received my cornea transplant and was gifted the gift of sight again. This allowed me to continue my work in health care and provide care for my children. I feel honoured to be able to work for BC Transplant and help coordinate life-saving transplants.”
Matthew Weiss is a pediatric intensivist working in Quebec City at the Centre Hospitalier Universitaire de Québec and an assistant clinical professor of pediatrics at the Université Laval. He has multiple provincial and national donation roles, most notably as medical director of donation at Transplant Québec. His research interests mainly focus on the implementation of legislative and policy reform in organ donation. He is the national lead of the LEADDR research program on implementation of reforms in Nova Scotia and had led or collaborated in the development of several deceased donation best practice guidelines. His multiple peer reviewed publications touch on diverse aspects of adult and pediatric donation. Dr. Weiss has presented on these topics in local, national, and international scientific conferences and is a frequent communicator of donation policies and practices in media outlets.
Dr. Deepali Kumar is Professor of Medicine at the University of Toronto. She is a transplant infectious diseases physician in the University Health Network Transplant Center in Toronto. Dr. Kumar has a translational research program that consists of both clinical and laboratory-based research. Her research focuses on immunologic responses to vaccines and viral infections in transplant recipients. She has supervised numerous graduate students and medical residents/fellows. She has authored over 200 manuscripts, editorials, and book chapters in the field of transplantation. She is currently Deputy Editor at Clinical Transplantation. She has held various leadership roles in the transplant field. She is currently Chair of the Canadian Standards Association Technical Committee for Cells, Tissues, and Organs. She is also currently the President-Elect of the American Society of Transplantation.
Dr. Silva e Silva’s is a former OTDC and has been devoted to research and active involvement in Organ Donation and Transplantation activities for over 10 years. Her research expertise is focused in quality improvement of organ donation programs worldwide. Dr. Silva e Silva was a Kidney Research Scientist Core Education Program (KRESCENT) fellow and is the lead with Dr. Dhanani of the CDTRP Allied Research in Donation and Transplantation (ARDOT) working group. She currently works as a research coordinator at the Children’s Hospital of Eastern Ontario and leads the investigation of burnout among donation coordinators, with the support and collaboration of Canadian Blood Services and key organ donation researchers nationally and internationally.
Dr. Alex Manara, FRCP FRCA FFICM, has been a Consultant in IntensiveCare Medicine at the Regional Neurosciences Intensive Care Unit in Bristol since 1990. He was a member of the Academy of Medical Royal Colleges’ Working Party on a Code of Practice for the Diagnosis and Confirmation of Death, the international guideline development for the determination of death in collaboration with the World Heath Authority, and a member of the World Brain Death Project. He led the implementation of one of the first controlled DCD programmes in the UK in 2002. He has been involved in the development of national and international guidance on both the determination of death and on DCD. He has also been involved in the development of guidance and best practice strategies in many other aspects of deceased organ donation. He is an expert advisor on organ donation to the UK Faculty of Intensive Care Medicine and the National Quality Lead for Organ Donation in the UK.
His other interests include the management of patients with devastating brain injury, end of life care in ICU, management of severe traumatic brain injury.
Dr. Healey is a specialist in Emergency and Critical Care Medicine. He is the current Chief of Emergency Services, former Medical Director of Critical Care, and an Emergency and Critical Care Physician at William Osler Health System in Brampton, Ontario. Andrew is a Staff Emergency Physician at St. Joseph’s Healthcare Hamilton and an Associate Clinical Professor at McMaster University in the Department of Medicine. Originally from Newfoundland, Dr. Healey has completed fellowship training in emergency medicine and critical care medicine, with a subspecialty focus on echocardiography at McMaster. He also completed a Master in the Donation of Organs, Tissues, and Cells for Transplantation at the Universitat de Barcelona, Spain. He is currently the Chief Medical Officer for Donation with Trillium Gift of Life (Ontario Health). His main interests are optimizing the donor family experience, improving donation-transplant communication, and uncontrolled lung donation. He is supported by four wonderful children and an extremely forgiving and understanding wife.
Aviva Goldberg is a pediatric transplant nephrologist and ethicist inWinnipeg, MB. She is the Section Head of Pediatric Nephrology and the Associate Dean UGME Student Affairs and Associate Professor at the Max Rady College of Medicine at the University of Manitoba. She is the Secretary of the Canadian Society of Transplantation and a member of CDTRP themes 1 and 5.
Charles Weijer is Professor of Medicine, Epidemiology & Biostatistics, and Philosophy at Western University in London, Canada. He is a leading expert in the ethics of randomized controlled trials. From 2008 to 2013 Charles co-led a collaboration that produced the first international ethics guidelines for cluster randomized trials. His current work explores ethical issues in pragmatic randomized controlled trials that evaluate health interventions in real-world conditions to better inform patients, health providers and health systems managers. Charles led the writing team for the World Health Organization guidance on “Ethical Considerations for Health Policy and Systems Research,” published in 2019. In 2020, he served on the WHO Working Group for Guidance on Human Challenge Studies in COVID-19. Charles held the Canada Research Chair in Bioethics from 2005 to 2019, and, in 2016, he was elected to the Royal Society of Canada.
“My personal perspective in the field of transplant continously invigorates my desire to contribute. To that end, I am PFD partner with the CDTRP and I am currently pursing a PhD in Immunology with the University of Toronto with a focus on transplant immunology. ”
Frédérick D’Aragon is an anesthesiologist and critical care consultant at Centre Hospitalier Universitaire de Sherbrooke (CHUS), Quebec. He is an associate professor at University of Sherbrooke and a FRQS Clinical Scientist. Dr D’Aragon is co-leading, with Dr. Maureen Meade, The Canada-DONATE research program which aims to improve organ donor care in the ICU.
Dr. Rowe (MD, MSc, CCFP(EM), FCCP, FCAHS) has been the ScientificDirector of the Institute of Circulatory and Respiratory Health (ICRH) at the Canadian Institutes of Health Research (CIHR) since late 2015. He is clinician-scientist working clinically in the University of Alberta Hospital emergency department and is a Professor in the Department of Emergency Medicine and School of Public Health at the University of Alberta, both located in Edmonton, Alberta.
Dr. Choy is Professor of Molecular Biology and Biochemistry at Simon Fraser University. He and his team are broadly interested in understanding the immunological mechanisms of transplant rejection and associated vascular injury. Recent studies are focused on understanding how inflammation and the gut microbiota influence immune responses that causes rejection and on development of strategies to protect blood vessels in grafts from early damage that causes rejection.
Laurie Blackstock is an intercultural facilitator and learning designer in the Ottawa area. She gained firsthand knowledge of the deceased organ and tissue donor process when her husband, Stephen Belliveau, experienced neurological death in January 2017.
Laurie joins us today as a Patient-Family-Donor (PFD) Partner with the Normothermic Regional Perfusion (NRP) ethics pilot study led by CDTRP Innovation Grant awardee Charles Weijer. She is also the CDTRP Patient Co-Lead for Theme 1: Improve a Culture of Donation; a member of the Organ Donation and Transplantation Cooperative (ODTC) Deceased Donation Working Group; and a member of the Ottawa Gift of Life advocacy and education group.
In 2018, Laurie told her husband’s story as a witness on behalf of the Kidney Foundation of Canada to the House of Commons Standing Committee on Health. Since then, she has been a guest speaker for numerous ODT events.
Manoela is Physiotherapist and has a bachelor degree in Dance. Additionally, she has Masters and Ph.D. degrees in Physical Education for the Federal University of Paraná (UFPR) – Brazil, where she studied the effects of home-based dance exercise program in people with Parkinson’s Disease. Currently Manoela is a CDTRP trainee and a postdoctoral fellow at the University of Toronto, Canada, working with Dr. Sunita Mathur in a study focused on Sarcopenia and Frailty in Solid Organ Transplant Candidates and Recipients.
Arthur J. Matas’s bio
Dr. Arthur J. Matas is a Professor of Surgery at the University of Minnesota – Twin Cities. Dr. Matas earned his medical degree in 1972 at the University of Manitoba, in Winnipeg, Canada. He did his surgical residency and transplantation fellowship at the University of Minnesota Hospitals, where he was actively involved in clinical and laboratory research.
Dr. Matas has authored or coauthored over 700 articles and book chapters and his research has been presented at numerous national and international meetings.
Dr. Matas is a long-standing member of many surgical and transplant-related societies including the American Society of Transplant Surgeons (of which he is a Past President).
Nicholas Murphy is a postdoctoral fellow with the departments of Medicine and Philosophy at Western University, Canada, and a CDTRP trainee. Supervised by Drs. Charles Weijer and Marat Slessarev, Dr. Murphy’s work explores issues in research ethics, particularly as they relate to organ donation and transplantation.
Dr. Samantha J. Anthony is a Health Clinician Scientist in the Child Health Evaluative Sciences Program of the Research Institute at the Hospital for Sick Children. She has over 20 years of experience in the SickKids Transplant and Regenerative Medicine Centre as a Social Worker and is an Assistant Professor in the Factor-Inwentash Faculty of Social Work at the University of Toronto. Dr. Anthony is also an Investigator with the Canadian Donation and Transplantation Research Program.
Dr. Dhanani is the chief of the pediatric intensive care unit at the Children’sHospital of Eastern Ontario (CHEO) in Ottawa and Associate Professor (Pediatrics) at the University of Ottawa.
He is now the Chair of the Canadian Donation Physician Network, Chair of Canadian Blood Services’ national Deceased Donation Advisory Committee, and steering committee member of Health Canada’s Organ Donation and Transplantation Collaborative. Dr. Dhanani is Associate Director for donation research for the Canadian Donation and Transplant Research Program.
His own area of focus is leading international research pertaining to practices and standards for determining death after cardiac arrest for the purposes of donation.
Tatsuma Hind, BSc, is a third-year medical student at the University of British Columbia with an interest in youth mental health and wellbeing. He is currently working with the Multi-Organ Transplant Clinic at BC Children’s Hospital, studying the impacts of post-traumatic stress on quality of life after solid organ transplantation. Other research interests include evaluating psychosocial screening instruments in the pediatric emergency department.
Linda’s initial career started as a physiotherapist, graduating from McGill University. Her career path led to a 25-year involvement with the development of STARS Air Ambulance in western Canada. Community engagement has included governance on charitable boards and she holds the director certification from the Institute of Corporate Directors. She retired from her management role with STARS with the start of her caregiver journey for a family member who faced rapidly evolving end-stage liver disease.
Linda is a PFD Partner participant in the International Donation and Transplantation Legislative and Policy Forum and is currently the Chair, Alberta ORGANization Group, a community collaborative to advocate for organ donation in Alberta.
Glenna will discuss the formation of the ODTC, provide reflections on the process of creating the collaborative project and then discuss achievements and a view going forward.
Glenna is the Director with Pharmaceutical and Supplementary Benefits in the Alberta Health Ministry. Glenna has been a member of the Provincial Territorial Blood Liaison Committee since 2010 and during that time has had responsibility for both blood and organ donation and transplant files with the Ministry. She was proud to lead the development and implementation of the Alberta Organ and Tissue Donation Registry in 2014, which was a major achievement in advancing a culture of donation in Alberta. Glenna became chair of the Organ Donation and Transplant Collaborative Steering Committee in 2019 and on that committee seeks to bring the perspective of Provincial and Territorial Ministries of Health to this important collaborative initiative.
Mary, Karmen and Craig are all Indigenous patient partners with experiences ranging from being on the pre-transplant waitlist while on hemodialysis, to successful kidney transplant with jurisdictional issues and living kidney donor experience. The speakers will weave their journeys to highlight their diverse experiences and perspectives on the intersections of patient-oriented research, barriers/access to care and building cultural competencies with the research teams they engage with.
Mary Beaucage is Anishnaabe from Nipissing First Nation, outside of North Bay ON. Mary has type-2 diabetes and developed end-stage kidney disease in 2013, for which she received dialysis. In March 2015, Mary received a kidney from her cousin. She co-chairs several provincial and national patient councils, including the Ontario Renal Network’s Patient and Family Advisory Council, and the Can-SOLVE CKD Network’s Patient Governance Circle and Indigenous Peoples Engagement Research Council (IPERC). Mary is also a member of the CDTRP. She has been a keynote speaker, panel member and presenter at provincial, national and international nephrology conferences. She brings a wealth of knowledge, enthusiasm and passion to her work. Mary is interested in educating and advocating in matters of Indigenous health, patient partnership, chronic kidney disease research, and organ donation and transplantation awareness.
Karmen Omeasoo aka Hellnback has been an active member of the Canadian music scene for the ladder part of 25+ years. Having helped spearhead the native hip–hop envelope into the Canadian mainstream was one of his main goals as an artist. Warparty, Team Rezofficial are both groups that have done just that they faced every challenge head on to achieve success. Hellnback also has a new challenge one that has tested his will in every direction and that is stage 5 Kidney failure. With a kidney function of 4% HellnBack’s goal now is to spread awareness. Father of 6 happily married to Lisa Muswagon. Kidney failure has not been an easy path but with the support of his wife and children he would like to let you know kidney failure is not a death sentence.
Craig Settee is Anishinaabe and Néhinaw (Swampy Cree) citizen of Fisher River Cree Nation and grew up in Winnipeg, Manitoba. He is a living kidney donor to his brother and has participated previously as a patient partner with the Network. He brings this lived experience to the Coordinator role of the Indigenous Peoples’ Engagement and Research Council (IPERC).
Craig has several years of experience working as a cultural support worker, Action Therapist and community organizer with First Nations and inner-city community-based organizations. He is passionate about increasing Indigenous representation and amplifying Indigenous voices to foster better collaborative working relationships. He is a strong believer in person-oriented and community-based research and does so by providing support to share stories, experiences and expertise of Indigenous patient partners. This support as a helper/oshkaabewis works towards increasing Indigenous health and wellness priorities in patient-oriented kidney research by incorporating cultural safety principles and actions into Can-SOLVE CKD Network projects and partnerships.
Sherrie is the Founder of Ashley’s Angels, a 3rd party fundraising initiative supporting The Hospital for Sick Children transplant program, which she formed following her daughter’s liver transplant in August 2009. She is responsible for overseeing and leading the organization’s strategies and overall direction.
Since the fall of 2019, Sherrie has been a member of the Starzl Network External Advisory Panel. Starzl consists of a network of pediatric transplant institutions committed to continuous improvement until every child can achieve a long and healthy life. The External Advisory Panel assesses Network sustainability and provides consultation, as needed. The Panel provides insight for improvement and offers expertise to advance Starzl’s mission and vision.
In 2015, Sherrie was recruited by the Studies in Pediatric Liver Transplantation steering committee to lead an International grassroots Patient and Family Engagement Committee. Achievements from this group have resulted in establishing a network of International pediatric liver transplant centers, the production of creditable and accessible transplant education tools, constructive clinical care feedback, the prioritization of patient-driven research and raising awareness for organ and tissue donation.
Since 2014, Sherrie has also played an active patient partner and charitable role with CDTRP in providing transplant patient/caregiver perspective and the opportunity to fund transplant research.
Sherrie is currently completing a Specialized Bachelor of Science Honours in Kinesiology and Health Science Degree at York University. She has also completed a Bachelor of Arts degree from Wilfrid Laurier University and received a diploma in Midwifery from Ryerson University.
Manoela is a Physiotherapist and has a bachelor degree in Dance. Additionally, she has Masters and Ph.D. degrees in Physical Education for the Federal University of Paraná (UFPR) – Brazil, where she studied the effects of home-based dance exercise program in people with Parkinson’s Disease. Currently Manoela is a postdoctoral fellow at the University of Toronto, working with Dr. Sunita Mathur since 2019 in the area of frailty and sarcopenia in solid organ transplant candidates and recipients. Since 2020 Dr Ferreira is developing an idea of having an accessible and feasible home-based exercise program for people with chronic diseases and solid organ transplant (SOT) candidates, recipients and living donors.
Heather Talbot is a retired teacher, and the mother of Jonathon Talbot who donated his kidneys, lungs, liver and heart valves when taken off of life support at the age of 22 following a fatal car crash in which he was the passenger in 2009. Heather subsequently became a volunteer for Trillium Gift of Life Network, the CTA, Sunnybrook Hospital’s Transplant Committee, and the CDTRP where she has mostly worked with the DePPaRT team.
Dr. Mucsi is a clinician investigator and transplant nephrologist at the Multi-Organ Transplant Program and Division of Nephrology at the University Health Network (UHN) in Toronto. He also holds a cross appointment with the Semmelweis University Budapest. His current research focuses on understanding and reducing barriers and disparities in access to kidney transplantation and living donor kidney transplantation (KT) and assessing the impact of psychosocial distress on clinical outcomes of kidney transplant recipients. Read more here.
Lindsey Kemp is born and raised in Edmonton, AB. With a degree in Music Performance (saxophone performance) and Education, Lindsey has taught for over a decade in the Edmonton Public School system. When she is not teaching, she is very involved in the music community, performing in the Edmonton Winds, conducting her own community ensemble (The Beer League Band) and on numerous musical boards across the province. For the past 5 years, Lindsey has had to take a break from teaching after having her amazing son, George. Maternity leave did not goes as expected as George was diagnosed with Dilated Cardiomyopathy at 5 months old and required 2 heart transplants before the age of 4. During this time, Lindsey has also began to dedicate her time building and expanding her charity: Big Gifts for Little Lives, where they raise money to fund Pediatric Heart Transplant research at the Stollery.
Dr. Suze Berkhout is an early career clinician-investigator and practicing psychiatrist. Her program of research in feminist philosophy of science/Science and Technology Studies utilizes ethnographic and narrative qualitative methods to explore social and cultural issues impacting access and navigation through health care systems. Within this work she focuses on the importance of lived experience in relation to knowledge in/of medicine, and related to mental health especially. She carries out this work in diverse populations, including in treatment resistance in mental health, early psychosis, transplant medicine, and Placebo/Nocebo Studies. Through the COVID-19 pandemic she has also been involved in the development and evaluation of mental health supports to health care workers. Her transplant-related research examines the challenges that span the process of solid organ transplantion, from waitlisting and psychosocial assessment, to adherence to medical advice, to long-term survivorship and graft failure, and uses arts-based approaches and ethnography to understand how social, cultural, and biological issues come together in these areas, and their impact on patients, support persons, and clinical teams.
Sylvia Okonofua’s bio
Sylvia is the President of the University of Regina’s Stem Cell Club. She recently graduated from the University of Regina with a degree in Biochemistry, with hopes of becoming a physician in the near future. She is also the Lead on the Black Donors Save Lives National campaign.
Andriy is a Principal at Juniper, a management consulting firm that specializes in strategy, innovation, and culture.He combines structured problem solving and human-centric design approaches to help organizations discover new strategic possibilities and develop new ways of working to help them become more sustainable and resilient. He has worked with a broad set of clients and industries to help them achieve their strategic and organizational goals. His experience spans from coaching and guiding executives at a nationwide entertainment company on setting and aligning strategic priorities for their organization, to helping a Canadian Crown Corporation create a detailed market analysis and strategic plan for a new digital product, to helping a non-profit organization transform its organizational structure with a focus on organizational agility and cross-functional collaboration. Andriy received his MBA from Queen’s University, where he was awarded the Gold Medal for Outstanding Achievement. He also has a degree in Electrical Engineering from University of Alberta, where he graduated with First Class Standing and he is a Certified SCRUM Master and Professional Agile Leader.
Brady Park is a donor recruiter and multimedia developer for Stem Cell Club, a donor recruitment organization that works to improve Canada’s stem cell donor registry. He is a fourth year undergraduate studying medical sciences at Western University in London, Ontario, where he has led the university’s Stem Cell Club chapter as co-president since 2019.
Brady launched and currently leads Stem Cell Club’s national TikTok committee, which develops short videos (TikToks) on the rapidly growing social media platform to support donor recruitment efforts. His team’s TikToks are published to tiktok.com/@stemcellclub and shared widely across social media, as well as by major medical organizations and Canadian media outlets. Brady also leads the development of longer videos featuring Canadian stem cell donors, recipients, family members, and recruiters. These videos support national virtual donor recruitment campaigns.
Brady’s research interests lie in the use of multimedia resources and social media to improve outcomes in hematopoietic stem cell donor recruitment, particularly the recruitment of committed ethnically/racially diverse donors. His work evaluates the impact of viewing multimedia on eligible donors’ knowledge and attitude towards stem cell donation, which are associated with donor ambivalence and attrition.
Étienne is a professional of international affairs specialising in the academic ecosystem. In his current position at Mitacs as Director, International Business Development, he oversees and supports the implementation of the Globalink Research Award (GRA) program.
This program facilitates international collaboration through research internships for undergraduate, graduate students and postdoctoral fellows. Etienne works closely with the offices of research services all over Canada and with Mitacs’s international partners in 39 countries in both the European Union and globally.
Before joining Mitacs, Etienne accumulated experience in international affairs at two major Canadian universities as an International Affairs Advisor at the Université de Montréal’s Faculty of Medicine and as a Manager, International Agreements and Partnerships at Concordia University. During his mandates, he developed various international partnerships to support student mobility, research and international cooperation.
Étienne completed a Bachelor’s degree in in Political Science at the Université de Montréal and holds a Master’s degree in International Politics and International Law from the Université du Québec à Montréal. During his studies and before starting his professional life, he conducted an internship in international cooperation and research in Malawi and India.
Initially trained in sociology, Isabelle Doré holds a Ph.D. in public health and epidemiology and a postdoctoral fellowship in kinesiology. She is an assistant professor at the School of Kinesiology and Physical Activity Sciences in the Faculty of Medicine of the Université de Montréal and in the School of Public Health of the Université de Montréal. She is a regular researcher at the Centre de recherche du Centre hospitalier de l’Université de Montréal (CRCHUM). Her research focuses on physical activity as a strategy to promote mental health and reduce the risk of anxiety and depressive disorders and aims to understand the mechanisms that may explain the benefits of physical activity on these mental health indicators. Her research focuses on adolescents and young adults in the general population, individuals diagnosed with cancer, and immunosuppressed populations.
Jennifer Raven is the acting Manager of the Training and Career Support team within CIHR’s Science Policy Branch. Since first joining CIHR in 2010, she has held positions with the Institute of Infection and Immunity, and in a number of branches including the College of Reviewers, and Initiative Management and Institute Support. Additionally, from 2016 to 2019, Jennifer was on interchange with the Public Health Agency of Canada, in the Infectious Disease Prevention and Control branch.
Jennifer holds a B.Sc. in Biochemistry from the University of Waterloo, and a Ph.D. in Experimental Medicine from McGill University.
Dr. Kimia Honarmand is an adult critical care specialist and clinical epidemiologist. She holds a Masters Degree from the Institute of Medical Science, University of Toronto and is completing a PhD in Clinical Epidemiology at McMaster University. Her research focuses on stakeholder perceptions regarding emerging and controversial practices and procedures in organ donation and transplantation. She has led several funded studies to evaluate the perceptions of healthcare providers and the general public in Canada regarding heart donation after circulatory death determination using mixed methods approaches. She has expertise in various research methodologies, including systematic review and meta-analysis, observational study designs, and qualitative and mixed methods research. She has over 30 peer-reviewed publications and serves as an investigator and methodologist with the Stakeholder Engagement Working Group for the Death Definition & Determination Clinical Practice Guidelines led by Canadian Blood Services (CBS), and as guideline methodologist on several Clinical Practice Guidelines sponsored by the Canadian Critical Care Society (CCCS) and Society of Critical Care Medicine (SCCM).
Dr. Kristina Krmpotic is a pediatric intensivist at IWK Health and assistant professor in the Department of Critical Care at Dalhousie University in Halifax, Canada. She is extensively involved in organ donation initiatives as a donation physician for Legacy of Life in Nova Scotia, co-Lead for activity one of the LEADDR program of research evaluating the impact of implementation of deemed consent legislation in Nova Scotia, and is the Donation Lead for the Academic Training Program at the CDTRP. Her research interests in organ donation are focused on improvements in system performance through analysis of quantitative metrics.
Dr. Lori West is a Professor of Pediatrics, Surgery, Medical Microbiology/Immunology and Laboratory Medicine/Pathology at the University of Alberta, and Tier 1 Canada Research Chair in Heart Transplantation. A clinician-scientist, she has longstanding interest and expertise in pediatric heart transplantation and transplant immunology, particularly related to ABO glycoimmunology. Her pioneering work on crossing ABObarriers led to global impact on infant heart transplantation. Director of the Alberta Transplant Institute, Dr. West is also the founding Director of the Canadian Donation Transplant Research Program (CDTRP), a national research coalition funded since 2013 by the Canadian Institutes of Health Research. She is past-president of the International Society of Heart and Lung Transplantation and the Canadian Society of Transplantation, and immediate past-chair of the Women in Transplantation international initiative of The Transplantation Society. A Fellow of both the Royal Society of Canada and the Canadian Academy of Health Sciences, Dr. West was recently appointed as an Officer of the Order of Canada.
Dr. Mary Smith holds a PhD in nursing from the University of Victoria and is a primary healthcare nurse practitioner in Ontario. She is also an Assistant Professor at Queens University in the school of nursing and is keenly interested in providing indigenous renal health through community driven and culturally safe research approaches. Her interests emerge from her own experiences as a living kidney donor and as a member of a First Nation community in Ontario. Mary has a volunteered with the Kidney Foundation of Canada and has provided presentations throughout Canada the United States and Australia on her experiences with kidney organ donation. Through the Kidney Foundation of Canada’s allied health grant Dr. Smith and her research team are currently engaged towards finding strength-based approaches indigenous solutions towards kidney health. In addition, she is also a volunteer member of the indigenous Peoples” Engagement and Research Council through the CAN-Solve CKD network. Furthermore, Mary has worked for over a decade in the provision of mental health care and is actively involved in mental health education.
Prior to his roll a Trillium Gift of Life Network/Ontario Health (TGLN), Michael served as a Funeral Director for 30 years. He is certified in crisis intervention and traumatic grief revitalization counselling. After accepting a position from TGLN in 2013 to build a support and aftercare program for Ontario donor families, another chapter of rewarding work began. This work has seen growth and expansion of supporting 2400 organ and tissue donor families per year that includes province wide donor recognition ceremonies, as well as, over 1000 pieces of anonymous correspondence being exchanged annually between recipients and their donor’s family.
For 30 years Sandra held various positions in the Banking industry. She received a liver transplant in 1997 after several years of going undiagnosed with a rare liver disease and Crohn’s disease. After years of treatment for Crohns she required a permanent Ostomy in 2012. She has dealt with skin cancer melanoma & currently has chronic kidney disease. One year post transplant Sandra was diagnosed with PTSD and takes medications to treat the anxiety and depression that goes with this mental illness.
Sandra is a Patient Partner co lead with the Canadian Donation Transplant Research Program (CDTRP) on the Long-term outcomes Theme. She helps to determine research questions, and co-design studies, recruit study participants and assist with knowledge translation. Her focus has been on Exercise, Nutrition & Mental Health and Wellness as these are the areas of research that Patients & Caregivers are interested in seeing done. Sandra was a Steering Committee member of CanRestore from 2014-2018.
Using her lived experience as a transplant patient & as a benefactor of organ donation she has been a passionate advocate for organ & tissue donation & has mentored others afflicted with diseases requiring a transplant on their healthcare journey.
Vanessa Gruben B.Sc.H (Queen’s), LL.B. (Ottawa), LL.M. (Columbia) is an Associate Professor at the University of Ottawa, Faculty of Common Law and a member of the Centre for Health Law, Policy and Ethics. Her research focuses on a variety of topics in health law including the legal and ethical issues regarding organ donation, assisted reproduction and professional self-regulation. She is co-editor of the 5th edition of Canada’s Canadian Health Law and Policy, co-edited with Joanna Erdman and Erin Nelson (LexisNexis, 2017). Her work has been funded by the Canadian Institutes of Health Research, the Social Sciences and Humanities Research Council, Canadian Blood Services and the Foundation for Legal Research.
Professor Gruben teaches graduate and undergraduate courses in Health Law, Public Health Law as well as a seminar on Access to Health Care.
BC Transplant’s organ donation team learned to make quick adaptations along the way during an ongoing, and evolving pandemic to ensure life-saving gifts were still a possibility to people in need. It was paramount to be malleable to a changing landscape.
Collaboration and communication with all health care partners become vital to the success of donation and transplant at a time when the system is extremely strained. Despite all the obstacles this pandemic has brought to organ donation, we set records for lung and heart transplants in 2020 and are on our way to break the record for deceased donations in 2021. This is a direct result of the commitment of our team and the bedside staff in British Columbia.
The Canadian Institutes of Health Research (CIHR) is Canada’s premier health research funding agency. Our strategic plan (2021-2031) focusses on excellence in health research; capacity development; Indigenous health research; equity, diversity and inclusion; and knowledge mobilization. This presentation will highlight the value of high-quality evidence in improving the health of all Canadians. In addition, he will summarize the national and international models for funding international multi-centered clinical trials. Finally, he will describe new funding for clinical trials being proposed at CIHR.
COVID-19 has impacted all aspects of transplantation and transplant recipients are at risk of severe disease. This talk will provide an overview of what we know about new therapies such as monoclonal antibodies and antivirals for COVID-19 and their use in transplantation. Donors are required to be screened for COVID-19 and the potential for use of organs from COVID-19 donors will be discussed. The immune response and effectiveness of COVID-19 vaccine in transplant candidates and recipients will also be presented.
Using longitudinal data collected since April 2020, we will present preliminary results from our studies currently ongoing that aim to better understand whether pet ownership and type of pet impact stress level, anxiety and depressive symptoms, resilience but also lifestyle habits such as sleep, sedentary behaviors and physical activity of immunosuppressed individuals and their relatives in the specific context of COVID-19 pandemic.
Individuals from Indigenous and racialized (African, Caribbean and Black [ACB], South and East Asian) communities in Canada have a higher risk of kidney failure, compared to whites, due to higher prevalence of diabetes, hypertension, some specific kidney disease. Potentially, lower access to preventative and risk reducing intervention may also contribute.
In turn, patients with kidney failure from these communities are much less likely to receive a live donor kidney transplant, which is the best treatment option for kidney failure from a medical perspective for eligible patients. Patients with kidney failure from indigenous and racialized communities are also more likely to wait longer for a deceased donor kidney transplant. In addition to socio-economic disparities, living in rural and remote areas of the country, mistrust in the medical system, historic and personal experiences with micro- and macro-aggression, experiences with racism within and outside the healthcare system may contribute to these persistent inequities. Potential lack of knowledge about the impact of kidney failure and the risk/benefit of each treatment modality may also contribute.
In this presentation I will focus on barriers patients from ACB and Asian communities may face when considering treatment options for kidney failure.
The endothelial glyxocalyx is a glycoprotein-rich coating on the luminal surface of vascular endothelial cells that has important immune modulatory properties. It is particularly susceptible to injury during organ procurement and this may play a role in triggering early graft inflammation and rejection. Rebuilding the endothelial glycocalyx by enzymatic conjugation of linear polyglycerol polymers containing the bioactive sugar sialic acid onto the surface of human endothelial cells reduced leukocyte binding and inhibited leukocyte-mediated cytotoxicity of endothelial cells. Application of this technology to artery grafts in a mouse model led to substantial reductions in early inflammation, and acute and chronic rejection. Also, this cell surface engineering of vascular endothelial cells in mouse kidney transplant models reduced ischemia-mediated kidney graft failure and allograft rejection. This work provides a foundation for the development a novel cell surface engineering protocol that can be applied to donor organs at the time of procurement and protects them from rejection.
– Hematologist, Leukemia/Bone Marrow Transplant Program of BC
– Scientist, Terry Fox Laboratory, BC Cancer Research Institute
– Assistant Professor, Department of Medicine, University of British Columbia
– Director, Clinical Cellular Therapy Laboratory, BC Cancer
– Medical Director, Conconi Family Immunotherapy Laboratory, BC Cancer
Dr. Kevin Hay is a Clinician Scientist at the Terry Fox Laboratory and Leukemia/Bone Marrow Transplant Program of BC in Vancouver. Dr. Hay received a Master of Science in Immunology at the University of Manitoba (2008), followed by an MD (2011). After completing residency in Internal Medicine (2014) and a clinical fellowship in Haematology (2016) at the University of British Columbia, he was awarded a scholarship through the Clinician Investigator Program of UBC to pursue a postdoctoral fellowship in cellular immunotherapy which he completed at the Fred Hutchinson Cancer Research Center in Seattle Washington under the mentorship of Dr. Cameron Turtle. Dr. Hay’s research focuses on understanding the unique toxicities associated with Chimeric Antigen Receptor (CAR) T-cells, as well as the development of novel CAR-T cell therapies. He is Director of the BC Cancer Clinical Cellular Therapy Laboratory where he oversees the processing of cells for hematopoietic cell transplantation. He also serves as Medical Director of the Conconi Family Immunotherapy Laboratory, a facility in British Columbia dedicated to the manufacturing of cellular immunotherapies, and is a Principal Investigator on a Phase I/II trial in Canada using CD19 CAR T-cells for the treatment of B-cell malignancies.
Throughout the pandemic, life as a vulnerable family has been a difficult and lonely one. I will be sharing with everyone what it has been like to be the parent of a transplant recipient, how Covid has affected us, and how we hope we can inspire others to pay more attention to taking care of the vulnerable people within their community.
In this presentation Dr Ferreira will explore how she adapted her PhD research study “Home-based dance exercise program for people with moderate Parkinson’s disease” to Movimentum which is platform for the Virtual Home-based exercise and well-being Centre for solid organ transplant patients and people with chronic disease. Also, she will talk about her start as a researcher in Canada, the importance of being exposed to networks/collaborators, and speaking-up about your ideas and how the CDTRP meetings and other presentations are helping her to build her career in Canada.
Michael will speak to the value of the exchange and content that occurs between recipients and donor families when writing to each other, along with positive grief outcomes for donor families struggling to find meaning in a loved one’s death. Although not permitted in Ontario at present, the desire for those connected by donation and transplantation to meet each other will be discussed.
Princess is a first-year master’s student at the Institute of Medical Science at the University of Toronto. She obtained her medical degree from the University of Benin, Nigeria. Princess is interested in understanding barriers resulting in health inequities among marginalized populations, particularly those affected by chronic health conditions like kidney disease. She is currently a member of the Kidney Health Education and Research Group working on ACTION, a project to improve access to Living Donor Kidney Transplantation in Ethno-racial Minority communities in Canada. In addition, she is aspiring towards a career in population health research and academia.
This presentation will discuss some of the common psychosocial challenges that exist across the extended temporalities of various types of solid organ transplantation: from initial psychosocial assessments, to waitlisting, to adherence post-transplant, and to long-term survivorship as well as graft failure. We discuss the limits of quantitative analyses in capturing the nuance and complexity of aspects of these challenges, and describe a novel project underway at UHN that brings together ethnography, arts-based practices, science and technology studies, and critical disability scholarship to re-imagine the frictions that can arise across the span of transplantation. Within this reimagining, we suggest that new areas and opportunities for care arise.
In Canada, the law protects the anonymity and privacy of organ donors and transplant recipients. Within this legal framework, the organ donation and transplantation community has developed a range of policies that permit the disclosure of certain types of information between donor families and transplant recipients. Some donor families and transplant recipients have argued that these laws and policies are overly restrictive and have advocated for the option to disclose identifying information and the opportunity to make contact with one another. This presentation will explore the current legal and policy frameworks in Canada and consider whether these frameworks should be revised to permit greater information disclosure.
The purpose of this presentation is to share the advancements of the national research program Burnout and Resiliency in Coordinators (BRiC study) that aims to identify and reduce work-related issues (e.g., burnout, compassion fatigue, moral distress, etc.) among organ and tissue donation coordinators in Canada. We will present the overview of the program along with the progresses made so far.
Dr Fortin will look at the ethical issues surrounding anonymity between donors and recipients.
Gabriele is currently a medical student at Queen’s University, Kingston, Canada. She has been involved in stem cell donor recruitment for over 5 years and has an interest in equity, diversity, and inclusion work. Gabriele is also lead of Why We Swab (@WhyWeSwab across Facebook/Instagram/Twitter), which develops and shares stories of stem cell donors and recipients, their family and caregivers, and transplant staff.
Louis Beaulieu is the Chief Executive Officer of Transplant Québec and Secretary and Treasurer of the Board of Directors, the Québec-wide Organ Donation Organization mandated by the Minister of Health and Social Services, since 2008. He is acting as administrator in Québec, Canada and internationally. Furthermore, he interacts with the media on a regular basis.
In 2011, Louis Beaulieu was elected Full member of The Transplantation Society (TTS) and, in 2013, member of the Board of Directors of the International Society for Organ Donation and Procurement (ISODP) where is acting as the Treasurer since 2017.
From 2010 to 2018, he was appointed by the Cabinet of Québec, as a member of the Board of Directors of the Fonds de recherche du Québec – Santé (FRQ-S).
Louis Beaulieu is a Speech-Language Pathologist since 1993. From 1996 to 2008, he was the President and Chief Executive Officer of the Ordre des orthophonistes et audiologistes du Québec*. Alongside this, he was the Vice President (1998-2006) and then the President (2006-2008) of the Québec Interprofessional Council. In 2017, he received the Award Mérite du Conseil. In 2014, he was honored by the Université de Montréal as one of the 8 graduates between 8 000 people form the 1989 promotion.
Louis Beaulieu obtained his first Bachelor’s degree in Arts, from Université Laval (1986). He earned his second Bachelor’s degree in Sciences in 1989, followed in 1993 by a Master’s degree in speech language pathology and audiology from Université de Montréal. In 2014, he complete the Summer School in Management of Creativity in the Society of Innovation, a HEC-Université de Montréal and Barcelona University program.
“Pediatrician from Switzerland, currently fellow in Pediatric Critical CareMedicine at the Montreal Children’s Hospital, McGill University. After my training in Pediatrics, I pursued a training in Pediatric Intensive Care, Neonatology and adult ICU. I have a research interest in congenital heart disease physiology and pediatric organ donation.”
Dr. Shemie’s area of interest is organ replacement during critical illness. He isa pediatric critical care physician, ECMO specialist and trauma team leader at the Montreal Children’s Hospital, McGill University Health Centre. He is a Professor of Pediatrics at the Montreal Children’s Hospital, McGill University and honourary staff in the Department of Critical Care Medicine, Hospital for Sick Children, University of Toronto. He is medical advisor, deceased organ donation, with Canadian Blood Services. His academic focus is advancing the science and practice of deceased organ donation. His research interests include the clinical and policy impact of organ failure support technologies, the development and implementation of national ICU-based leading practices in organ donation and research at the intersection of end-of-life care, death determination and deceased donation.
“We will walk you through the journey of incredible loss, hope, joy and peace as we share our story. The story of how the loss of a teenage boy and the sheer determination for keeping his legacy alive found an unexpected road which led to family, love and a sense of gratitude.”
Donor mother and mother of 2, trying to make a difference and continue a legacy.
Grateful Heart Recipient, 50 year old father of two children, a man living life to the fullest every day.
Dr. Mélanie Dieudé is an immunologist, Professeure Associée at the Faculty of Medicine of Université de Montréal, Principal Scientist at the Centre de Recherche du Centre Hospitalier de l’Université de Montréal (CRCHUM), and the Executive Director of the Canadian Donation and Transplantation Research Program. She is the recipient of numerous distinctions such as the Scientific Personality of the Year 2017 (LaPresse, Montreal), and the American Transplant Congress Young Investigator award (2011). Dr. Dieudé research program focusses on tissue injury derived extracellular vesicles and their impact on autoimmune responses of importance in Solid Organ Transplant rejection, Graft vs Host Disease and Systemic Lupus Erythematosus.
Dr John Gill is Professor of Medicine with tenure at The University of BritishColumbia, Division of Nephrology, St. Paul’s Hospital.
Dr Gill completed his medical training in 2000–BSc 1990, MD 1995 (British Columbia), Internal Medicine 1998 (Western Ontario), Nephrology 2000 (British Columbia)–and completed a Masters degree in clinical care research at Tuft’s University in Boston (2002) before joining the Division of Nephrology at UBC in July, 2002.
John is an active researcher whose interests include clinical outcomes in kidney transplantation, access to care, clinical trials and health services research. He has served as the supervisor for Masters and PhD candidates at the UBC School of Population and Public Health. He holds a Canadian Institutes of Health Research Foundation Grant and received the Established Clinical Investigator Award from the American Society of Transplantation in 2017. He is a Past President of the Canadian Society of Nephrology and the Canadian Organ Replacement Register Board of Directors. He previously served as a co-chair of the White House Research and Innovation in Transplantation Working Group under President Obama.
Dr Gill currently serves on the Expert Advisory Panel of the United States Renal Data System and the External Expert Panel of the NIH Apollo Study. John is Consulting Editor for the American Journal of Transplantation and Associate Editor of the Journal of the American Society of Nephrology. John is President-elect of the American Society of Transplantation and is also a member of several national working groups to advance care for transplant recipients in Canada.
Dr. Anton Skaro joined the Division of General Surgery and Multi-Organ Transplant Program, Department of Surgery, Western University in September as an Associate Professor. Dr. Skaro completed medical school at Western University followed by residency and a PhD at Dalhousie University. He completed a fellowship in Transplantation Surgery at Northwestern University in Illinois after which he joined the Northwestern Department of Surgery as an Assistant Professor. He was promoted to Associate Professor at Northwestern in 2014.
Dr. Skaro’s research in liver transplantation has garnered significant grant funding from the National Institutes of Health (NIH) / National Institute on Aging/National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). He has more than 50 publications in the peer-reviewed literature and has presented his research nationally and internationally.
“I am an academic critical care physician practicing at a quaternary care centre and a general internist. My experiences include a diverse practice that includes community hospital settings. I am a PhD Candidate with a research interests in clinical trial design and guideline development in the areas of point-of-care ultrasound as well as deceased organ donation. I also am engaged in the education of medical students, residents, and critical care fellows.”
Henrietta graduated from medical school at the University of Aberdeen inScotland (UK) and left clinical practice to retrain as a lawyer at the College of Law in London. After working as a barrister in London, she embarked on a PhD at the University of Glasgow to pursue her interest in academia. She is currently writing up her dissertation which examines the concept of donor autonomy in organ donation. Her research interests are in medical law and specifically, in the ethical and legal issues of organ transplantation.
Stephen M. Robbins Ph.D. is the Director of the Lady Davis Institute at theJewish General Hospital, Glaxo Smith Kline Chair in Pharmacology and Professor in the Gerald Bronfman Department of Oncology at McGill University. In 2013 he was appointed as the Scientific Director of the Canadian Institutes of Health Research, Institite of Cancer Research and has served two terms.
He completed his undergraduate degree at York University in 1985 and then completed his PhD in 1991 at the University of British Columbia in the Department of Microbiology and Immunology. He obtained his passion for cancer research while pursuing his postdoctoral studies (1991-1996) under Nobel laureate, Dr. J. Michael Bishop at the University of California at San Francisco. He joined the University of Calgary in 1996 where he elevated to the rank of Professor in the Departments of Oncology and Biochemistry and Molecular Biology. He finished his final term as a Scientist of the Alberta Innovates Health Solutions (formerly known as the Alberta Heritage Foundation for Medical Research) and held a Canada Research Chair Tier 2 in Molecular Genetics of Cancer. From 2009-2013 he was the Director of the Southern Alberta Cancer Research Institute and was the Associate Director Research for Alberta Health Services Cancer Care. In addition to serving as the Scientific Director of ICR he is the current Chair of Governing Council for the International Agency for Research on Cancer (Lyon, France) and past Chair of the Canadian Cancer Research Alliance.
Dr. Robbins has had a long-standing interest in understanding the biochemical circuitry that controls cellular proliferation and differentiation and how this circuitry goes awry in cancer. During his research career he has taken a more translational approach including defining new therapies for malaria, has discovered a novel class of anti-inflammatory agents and identified new therapeutic targets for brain tumours. Recently a peptide that he and his colleagues discovered has moved to a Phase 2 clinical trial in hospitalized COVID-19 patients. In addition to maintaining a productive research program he is also committed to teaching and graduate education and has won several awards with respect to these activities.
“I majored in microbiology and biochemistry at the University of Muenster, Germany and did my doctoral work (in dubious German) with Paul Tudzynski, studying the role of active oxygen in the pathologic mechanism of the rye pathogen Claviceps purpurea (most notorious for producing the LSD precursor lysergic acid).
As a postdoc in Vancouver I switched to the field of medicine, comparing heat shock protein epitopes in pathogenic and commensal strains of Staphylcococcus- and wondering how the immune system differed between the two (remember flesh eating disease). In my second postdoc with Dr. Ted Steiner, I looked at the influence of stress (ATP, active oxygen) on intestinal cell sensing of bacterial flagellin; did strange (but gentle) things to mice to further the understanding of inflammatory bowel disease. I moved to a research associate position with Kirk Schultz, who specializes in leukemia immunotherapy. In his lab I organized his clinical research trials, ran yet more ELISAs and dabbled a bit on the side in the immunostimulatory properties of mitochondrial DNA, among other things. Finally I have landed in Megan’s hardcore adaptive immunology lab where I am all about developing and standardizing assays for the clinical setting. One project aims to stratify patients with autoimmune disease based on likely response to biologicals, another deals with immune monitoring of post-transplant patients by flow cytometry.
My prevailing interest is in the conflict between self and everything that is not self (including altered self-cancer, and somebody else’s self-transplant). Which covers just about everything.”
Susan Doherty is an award-winning Montreal author of both fiction and non-fiction. Her volunteer work on the psychiatric units at the Douglas Hospital led to the publication of The Ghost Garden, an exploration of the lives of people suffering from psychotic illnesses. Her new work of fiction, The Monday Rent Boy, deals with child exploitation on the Darkweb. She is an active board member at several shelters for vulnerable women.
In 2015, she contracted HLH. a rare blood disorder that required a bone marrow transplant. 23-year old William Ashby-Hall of St. Albans, UK was her stem cell donor.
At the time of my SCT, Canadian MSM donors were severely restricted from joining the blood services registry. It’s a bias that excludes an important group of young men from participating in the life-saving act of stem cell donation. These rules have been re-examined, and I’m the beneficiary of a critical subset of global members who wish to save lives.
Rupal Hatkar is a third year PhD student in cancer genomics at University of Toronto (U of T) in the department of Laboratory Medicine and Pathobiology. In addition to her graduate studies, she also works as a stem cell specialist at Princess Margaret Hospital, where she assesses blood stem cell donors and recipients to ensure informed consent and clearance for transplant, and supports the management of the cellular therapy inventory (including domestic and international stem cells). Since 2019, Rupal has served as co-president of the U of T chapter of Stem Cell Club, a non-profit organization which works to raise awareness about blood stem cell donation and increase representation of diverse ethnic/racial groups on the Canada’s Stem Cell Registry. In addition to her leadership in stem cell donor recruitment at U of T, Rupal supports national donor recruitment efforts through her work developing and evaluating virtual campaigns to recruit specific needed demographics of donors and to build a more inclusive donor registry, including for LGBTQ2S+ people.
Dr. Gofton completed medical school at Dalhousie University (Halifax, Nova Scotia, Canada) followed by Neurology residency training at Western University. She has dual fellowship training in Hospice and Palliative Medicine at Memorial Sloan-Kettering Cancer Center (New York, New York, USA) and in Neurocritical Care and Electroencephalography at Western University. Dr. Gofton is currently an Associate Professor at the Schulich School of Medicine and Dentistry (Western University) in the Department of Clinical Neurological Sciences and has been a faculty member since 2012. She is the acting director of the Neurocritical Care fellowship training program.
Dr. Gofton has been an invited speaker at national and international meetings and has received research grant support from national funding agencies. Her research interests and publications are on topics in neurocritical care and neuropalliative care. In neurocritical care, Dr. Gofton’s research focuses on disorders of consciousness, status epilepticus and neurophysiology as it relates to deceased organ donation. In neuropalliative care, Dr. Gofton investigates challenges and barriers to initiation of neuropalliative care, neuropalliative care in serious neurological illness and neuropalliative education for trainees.
Jennifer A. Chandler researches and writes about the legal and ethical aspects of biomedical science and technology, with focuses on mental health law and policy, neuroethics, organ donation and regenerative medicine. She has published widely in legal, bioethical and health sciences journals and is the co-editor of the recent book Law and Mind: Mental Health Law and Policy in Canada (2016).
She is internationally recognized for her research and writing in the law and ethics of the brain sciences. She is an elected member of the Board of Directors of the International Neuroethics Society, and serves on international editorial boards in the field, including Clinical Neuroethics (part of the Cambridge Quarterly of Healthcare Ethics), the Springer Book Series Advances in Neuroethics, and the Palgrave-MacMillan Book Series Law, Neuroscience and Human Behavior. She is also a member of the international advisory boards for the Institut du Cerveau et de la Moelle Épinière (ICM) Neuroethics Network (Paris), and the Société française de psychologie juridique (Paris).
She contributes to work on legal policy and the administration of justice in Canada as a member of the Board of Directors of the Canadian Institute for the Administration of Justice, and is active in public policy in organ donation and transplantation as a member of the ethics committees of the Ontario Trillium Gift of Life Network and Canadian Society of Transplantation.
She holds the Bertram Loeb Research Chair at the University of Ottawa, leading several research teams addressing trust in the organ and tissue donation system, family decision-making at end of life, and the law and ethics of ante-mortem interventions intended to support organ donation. She is also a co-lead of the Research Core on Ethics, Law and Society for the Canadian National Transplant Research Program.
Her ethico-legal and qualitative empirical research at the cutting edge of advances in biomedical science and technology has been funded by CIHR, SSHRC, Canadian Blood Services, the Stem Cell Network, Genome Canada, Law Foundation of Ontario and the Canadian National Transplant Research Program.
At the University of Ottawa, Professor Chandler teaches courses in Mental Health Law and Neuroethics, Medical-Legal Issues, and Tort Law, and holds an interdisciplinary reading group called “Mind Brain Law” on ethico-legal questions raised by emerging research in the brain sciences, behavioural genetics, and mental health law. She is a member of the Centre for Health Law, Policy and Ethics, where she co-leads the interdisciplinary working group on Power, Vulnerability and Health.
She holds degrees in Law from Harvard University and Queen’s University, and a degree in Biology from the University of Western Ontario. She joined the University of Ottawa’s Faculty of Law in 2002, after serving as clerk to the Hon. Mr. Justice John Sopinka of the Supreme Court of Canada.
Claire Williment was appointed as the Head of Transplant Development in NHS Blood and Transplant in 2013, with responsibility for developing and implementing strategies for increasing the number and quality of organs for transplant both nationally and internationally. In 2017 she was appointed as the Accountable Executive for Opt Out Legislation Implementation, to oversee the development and delivery of plans to implement the changes in 6 different UK countries regarding consent for organ and tissue donation. In 2020, she was appointed as the Accountable Executive for the Organ Utilisation Programme, leading a portfolio of activities aimed to maximise the potential for organ transplantation in the UK. She is also the Secretary to the Organ Utilisation Group, responsible for making recommendations for improving the UK transplant services.
Prior to joining NHSBT, Claire worked in the Department of Health, where she was a Senior Policy Lead with organ donation, respiratory disease and pathology services within her portfolio. She also spent several years working in Health Ministers’ offices.
Lauren Sano is currently an undergraduate student at Western University inLondon, Ontario. She is the co-president of the Stem Cell Club at Western’s chapter and has been involved with stem cell donor recruitment for several years. She was previously a stem cell donor for her father, and she uses her story as a platform to encourage and educate others to join the registry. She is also a member of the @WhyWeSwab team which develops stories of stem cell donors and recipients.
Dr. Roza is an Associate Professor at the School of Nursing at the Federal University of Sao Paulo – Unifesp. She graduated in nursing, and specialized through the residency program in surgical nursing, at Unifesp. Dr.Roza completed her Master and Doctoral degrees at Nursing School, Federal University of Sao Paulo – Unifesp, with emphasis in organ donation research investigating family refusal reasons in Brazilian Organ Donation Organizations. She is the leader of the Study Group in Organ and Tissue Donation and Transplantation – GEDOTT / CNPq. She is currently the associate Editor of the Acta Paulista de Enfermagem Journal, a member of the Brazilian Association of Organ Transplants – ABTO, Department of Transplant Coordination, and an active member of the International Transplant Nurses Society. As a full member of the Brazilian Health Regulatory Agency (ANVISA) Permanent Biovigilance Commission, she coordinates the funded project “Implementation of the National Biovigilance System”, funded by the United Nations Development Program in Brazil (UNDP). PAHO-Washington consultant for the “technically subsidize the management of hemo and biovigilance and post-use surveillance of food, cosmetics and sanitizing products by anvisa, regarding the preparation of the chapter on biovigilance-concepts and the work plan for the construction of the biovigilance module of the OPAS strengthening of government course on the national system of donation and transplantation. She also leads the funded project “Smart Autonomous Packaging for the Cold Chain of Health Systems”, to develop a safe transportation system for products of human origin, especially organs, tissues and cells for transplantation, in partnership with Mauá Institute of Technology, the São Rafael Industry and Comerce Ltda., and the Technology and Food Institute (ITAL) – Department of Agriculture and Supply (Sao Paulo).
Antemortem interventions are performed on a prospective donor in the context of controlled donation after circulatory death with the aim of optimizing the chances of successful organ transplantation. These include procedures and adjustments to the management of the dying patient which benefit the transplant recipient and offer no clinical benefit to the donor.
In this presentation, we will discuss the central ethical and legal issues in antemortem interventions in terms of the interests of the prospective donor and the justification for harm, the validity of consent, and the authority of surrogates to make decisions on behalf of the patient.
Randomized controlled trials of antemortem interventions in organ donation are required to ensure that such interventions are both safe and effectiveness. The design and conduct of RCTs of antemortem interventions raise difficult ethical issues, including informed consent from donor families and recipients, equipoise, protections for imminently dying patients, and protections for research bystanders, including donor families and recipients of non-target organs. Ethical guidance specific to RCTs of antemortem interventions in organ donation does not exist and is urgently needed.
In donation after circulatory death, donor interventions aim to improve transplant outcomes. However, the clinical science of antemortem intervention to improve posttransplant organ function remains underdeveloped. The design, organization, and conduct of randomized clinical trials in donation after circulatory death are severely curtailed by a myriad of ethical, regulatory, and pragmatical challenges. Raising awareness on these unique issues will benefit the donation and transplantation communities.
Systemic lupus erythematosus (SLE) is an autoimmune disease, in which the body’s immune system attacks its own cells and organs. One of the attacked organs is the kidney, leading to a disease called lupus nephritis (LN). LN is a serious manifestation, affecting 60% of adults with SLE. The attacked kidneys are then unable to filter waste products from the blood properly. About 30% of patients progress to end-stage renal disease where the kidneys no longer work. Patients then must go on dialysis or have a transplant to survive. During LN, the immune system attacks the blood vessels that deliver oxygen and nutrients to the kidneys. Our group has shown that attacked blood vessels, when they die, release messengers that can alert the immune system and induce the production of autoantibodies, antibodies directed against molecules of the individual himself. One of these molecules, “LG3”, is found on micro-vessels. Our group has also demonstrated that the autoantibodies directed against LG3, the anti-LG3, were important actors in the loss of micro-vessels in several kidney diseases and in the rejection of transplants. We have also demonstrated that anti-LG3 autoantibodies measured after kidney transplantation are associated with severe vascular rejection and that pre-transplant anti-LG3 levels are also associated with acute vascular rejection of renal allografts. We have found that these anti-LG3s were present in greater amounts in the blood of patients with LN as well as in mice with lupus. The objective of my project is to characterize the impact of anti-LG3 attack on kidney micro-vessels to identify new mechanisms and predictors of renal dysfunction. My project provides a unique opportunity to identify new intervention targets to develop tests and therapies that will help monitor
and treat patients with LN to prevent the devastating effects of this disease and the need for transplantation.
Introduction: Low muscle mass is common in children waiting for liver transplantation and can make recovery after transplant more difficult. Muscles are made up of different fibers which have different functions. Some muscle fibers are better for endurance activity (slow muscle fibers [type I]), where some are better for power and strength (fast muscle fibers [type IIA and IID]). Little is known how these muscle fibers are affected by the loss of muscle that happens with liver disease. This study aims to describe the differences in muscle (fiber types, and size) in children who have experienced loss of muscle and those who have not.
Methods: Children were recruited from the Stollery Children’s Hospital Pediatric Transplant Clinics. Muscle mass was determined from MRI or CT scans done at time of transplant assessment and was corrected for height to determine muscle index (cm2/m2). Low muscle mass was determined by comparing muscle index of healthy controls to children with liver disease. Biopsy samples of the abdominal muscles were taken at time of transplant. Muscle fiber histology was performed to determine the amount and proportions of different types of muscle fibers present within the biopsy sample.
Results: 18 children (0.3 – 15.0 years) have been recruited. 14 children have been transplanted, 2 subjects are currently awaiting transplant, and 2 have died waiting for transplant. The most common type of liver disease was biliary atresia (39%), followed by Alagille’s syndrome (17%) and other (44%). A total of 33.3% of children had low muscle mass. The percentage of fiber types were: type I (56.8 ± 11.1%), type IIA (47.3% ± 16.6%) and type IID (8.2 ± 3.2%). However, no differences were seen the proportions of muscle fibers in children with and without low muscle mass.
Conclusions: This data suggests that children with liver disease who have normal muscle mass and low muscle mass both have similar proportions of muscle fiber types.
Background: Kidney transplantation (KT) is the best treatment for patients with kidney failure. But a KT does not last forever and many patients will eventually lose their transplanted kidney. There is barely any research about the experiences of patients who have lost a transplanted kidney. Also, no research has looked at how these patients decide what to do next – for example, whether or not to get another transplant. Because there is so little research on this, our aims are to: i) understand the experiences of patients who have lost a transplanted kidney; ii) understand how they decide on treatment afterwards.
Methods: This is a qualitative study, which means that we will gather information by talking to people who have lost a transplanted kidney to find out about their experiences and what they think. Firstly, we will ask 30 people who have lost a KT to keep a diary for six months, where they can write about their experiences. After that, we will interview them to talk about these experiences.
Anticipated findings: The findings of this study will be in-depth accounts about the experience of graft loss, in the words of the people who experience it. By finding out about the experience of losing a transplanted kidney from people directly, we can also make sure that strategies to improve healthcare for these patients are firmly based on their perspectives.
Significance: Understanding more about the experiences of people with a failed KT has been identified as a priority. There is so little research about what care patients need after a losing a transplanted kidney. Clearly, we need to know more about this from the perspective of patients so that we can improve care for them if their graft fails. Our study will get these perspectives and inform strategies to improve patient care.
Patients receive heart transplants as a life-saving measure after heart failure; thus, ensuring the success of the transplant is of utmost importance. Rejection is one of the major causes for heart transplant failure, and consequently, patients must take drugs that suppress the immune system to prevent rejection. However, these drugs are unspecific and cause serious side effects that can be life-threatening. New immunosuppressive drugs that can prevent transplant rejection while allowing normal immune function can greatly improve care and patient outcomes. One type of immune cells called regulatory T cells (Tregs) can effectively suppress the immune system in a highly specific manner. We believe these cells can be effective in preventing and treating acute rejection. Working toward such a goal, we first sought to understand how Tregs behave during rejection. We tracked Tregs by measuring 36 genes (Treg-associated genes) in the blood of heart transplant patients throughout the first year post-transplant. We found that Treg-associated genes were downregulated not only at the time of acute rejection diagnosis but also in all samples from patients who developed acute rejection. This finding suggests a clear difference in Treg response between stable patients and rejectors. Measuring Tregs in heart transplant patients may help predict patients at higher risk of developing acute rejection.
Background: Matching of kidney donors and recipients is an important predictor of outcomes following kidney transplantation. Studies have demonstrated weight pairing of donors and recipients (DR) to be particularly important for kidney graft outcomes. Recipients receiving organs from smaller donors have been shown to experience significantly worse outcomes than those receiving kidneys from weight-matched donors. With the rising rates of obesity amongst kidney transplants recipients, the impact of obesity in the setting of DR weight mismatch warrants investigation. We investigated the outcome of delayed graft function, defined as need for dialysis within the first 7 days following transplantation.
Methods: We used a large database to identify kidney transplant recipients. We grouped DR according to their weight mismatch at time of transplantation, which yielded the following 4 groups: weight mismatched DR by >30 kg and 10-30 kg (D>R; D<R). We separately grouped DR according to their obesity status, using a BMI cut point of 30 kg/m2 to identify obese vs. non-obese DR. We determined the likelihood of DGF for each of the DR weight mismatch groups compared to weight matched DR.
Results: A total of 255,480 transplant recipients were included; 18% developed DGF. DGF was highest in the 30 kg weight-mismatched groups (22.4% for D>R; 21.1% for D<R). In all DR obesity pairings, D<R by 30 kg was associated with the greatest risk of DGF versus no weight difference.
Conclusion: Our study demonstrated that the risk of DGF is highest in the setting where recipients are larger than their donors by 30 or more kg. This finding was observed irrespective of DR obesity status. This may be explained by more complicated surgery in the setting of larger recipient-to-donor size. This finding is supported by previous studies which have demonstrated DGF to be linked to more difficult and prolonged transplant surgery.
Measuring single kidney volume in ultrasound may be a useful surrogate biomarker for renal function, as the renogram requires scarce materials and high costs. Measuring volumes using ultrasound is a promising approach, but requires expertise to identify and measure. In this pilot study, we explored a machine learning approach to SKV estimation in 2D ultrasound cine clips in transplant and native kidneys. A machine learning algorithm was trained using 514 images that were annotated by the sonographers for the kidney capsule. A different set of 16 patients (32 cine clips, 16 volumes) were randomly selected. The sonographers measured the kidney lengths and widths in these cines. The trained algorithm processed the cines, and generated a prediction for the frame with maximum capsule area. It fit a bounding box to it, where the recentangle dimensions serve as the kidney dimensions. The annotators SKV measured was 220 ± 119 mL (95% CI: 162, 278), while the algorithm SKV measured was 224 ± 109 mL (95% CI: 171, 277) with no significant differences. The mean absolute difference was 4 mL while the mean relative difference was 6.7%. For comparison, a +0.1 cm error in each of the algorithm’s measured dimensions using the same volume equation would result in an absolute difference of 78 mL and a relative difference of 42%. There was no performance difference between native kidneys and transplanted kidneys. Manual measurements require 5 to 10 minutes, whereas the algorithm requires < 10 seconds. In this pilot study, an automatic algorithm to measure SKV from 2D ultrasound cines was demonstrated to be comparable to expert estimates of volume. Such a technique may permit for the automatic, rapid and reliable measurement of SKV using conventional standard 2D ultrasound imaging. Future work includes correlation against renogram functional tests and prospective validation of the technique.
Anna Horton holds an undergraduate degree in Social Anthropology fromEdinburgh University and an MSC in Family Medicine from McGill University. She is a qualitative researcher at the Research Institute of the McGill University Health Centre, where she applies her background in social sciences to research in transplant nephrology.
Rohit Singla is a MD/PhD student and Vanier Scholar at the University ofBritish Columbia (UBC). Supervised by Prof. Robert Rohling and Dr. Chris Nguan, I research intelligent ultrasound for chronic kidney disease and transplantation. I firmly believe in technology’s ability to improve the lives of patients and healthcare providers.
“My current research interests include ultrasound, artificial intelligence, chronic kidney disease, kidney transplantation and medical trainee education.”
Faisal Jarrar is currently finishing his final year of medical school at Dalhousie University in Halifax, Nova Scotia. Supervised by Dr. Amanda Vinson and Dr. Karthik Tennankore, his research with Kidney Research Institute Nova Scotia (KRINS) is focused on the interplay between donor and recipient obesity and various graft outcomes after renal transplantation. He plans on pursuing a residency in Internal Medicine and hopes to make research a central component of his future practice.
“I am a Registered Dietitian and currently in second year of a Master’s Program in Human Nutrition and Metabolism at the University of Alberta. My areas of interest include pediatric liver and gastrointestinal disorders. My main research focus is on how muscle wasting and alterations in body composition affects pre-and post-operative outcomes in children undergoing liver transplantation. I hope to develop nutrition and exercise rehabilitation strategies to improve outcomes and quality of life for these patients.”
Ji-Young Kim is a Postdoctoral Fellow at the University of British Columbia and the Prevention of Organ Failure Center of Excellence (PROOF). She has a PhD in Neuroscience from the University of Arizona and has expertise in data science and molecular biology. At the PROOF Centre, Ji-Young co-leads the clinical validation trial of HEARTBiT assay, which a blood-based diagnostic test for exclusionary diagnosis of acute cellular rejection in heart transplant patients. Her postdoctoral research focuses on understanding what constitutes an optimal immune suppression following transplantation and translation of these discoveries to biomarkers that can improve transplant care.
Marie-Hélène Normand is currently 11 months into a Master’s Program in Microbiology and Immunology at the University of Montreal. She holds an undergraduate degree in Molecular and Cellular Biology from the University of Sherbrooke. Supervised by Dr. Mélanie Dieudé, her research focuses on characterizing the impact of vascular injury triggered autoimmune responses on the development of lupus nephritis and end stage renal failure (ESRF). With this research she aims to identify biomarkers and new intervention targets to develop tests and therapies that will help monitor and treat patients with lupus nephritis to prevent ESRF and the need for transplantation.
Marie-Josée Hébert earned a specialized degree in nephrology at the Université de Montréal, followed by postdoctoral studies at Harvard. Dr. Hébert is a researcher and nephrologist-transplant physician at CHUM, professor in the faculty of medicine and co-holds the Shire Chair in Renal Transplantation and Regeneration. She is also co-director of the Canadian Donation and Transplantation Research Program (CDTRP) and founder of numerous interdisciplinary and cross-sectoral research groups.
Her laboratory focuses on the role of programmed cell death as a major pathway contributing to immune dysregulation, rejection and abnormal vascular repair. Findings from her team have led to the characterization of new mediators of rejection and renal failure in humans. They also contributed to a better understanding of the mechanisms of fibrogenesis triggered by endothelial injury, autophagy and apoptosis. Fellow in the Canadian Academy of Health Sciences, Marie-Josée Hébert received the Dr. John B. Dossetor Research Award (2015) and the Medal for Research Excellence (2016) from the Kidney Foundation of Canada. In 2017, she was named scientist of the year by the newspaper La Presse.
As vice-rector of research, discovery, creation and innovation at the Université de Montréal since 2015, she has played a leading role in the development of major interdisciplinary research initiatives, including the launch of IVADO – Institute for Data Valorization, Mila – Quebec Artificial Intelligence Institute, the Digital Health Consortium and the Montreal Declaration for the Responsible Development of Artificial Intelligence.
Dr. Patricia Gongal is the incoming interim Executive Director of the CDTRP.She completed her PhD in Molecular Biology and Genetics from the University of Alberta in 2009, and a postdoctoral fellowship in developmental biology at the Ecole Normale Supérieure in France. She has worked in a variety of roles supporting researchers and research programs, including as an independent scientific writing consultant, as a Research Development Officer at Aberystwyth University, UK, and as Director of Major Grants at the University of Alberta’s Faculty of Medicine & Dentistry, where she developed, implemented and managed the strategy for large-scale research funding initiatives. Since 2020, she has worked with the CDTRP as Director of Strategic Communications.
Dr. Lorraine Hamiwka is an Associate Professor at the University of Calgary,Cumming School of Medicine and a Pediatric Nephrologist at the Alberta Children’s Hospital. She is the Past-Chair of the Pediatric Group of the Canadian Society of Transplantation. She is the Director of the Pediatric Kidney Transplant Program at the Alberta Children’s Hospital and leads the “Young Adult Kidney Transplant Clinic” in Calgary designed to improve young adult kidney transplant recipients’ healthcare experience. Her research interests in pediatric transplantation include quality of life and long-term outcomes. Dr. Hamiwka is currently involved and supports several national multicenter transplant research projects as well as many national initiatives.
Dr. Amy Waterman
Amy Waterman is the Division Chief for Patient Engagement and Diversity for the Center for Outcomes Research at the Houston Methodist Research Institute, the Director of Patient Engagement, Equity, and Education for the Department of Surgery at Houston Methodist Hospital, and an Affiliate Faculty Member of the Terasaki Research Institute. Dr. Waterman’s research examines how best to expand access to transplant, reduce racial disparities in transplant, ensure informed decision-making, ensure transplant adherence, promote paired donation, and increase living donation rates. Her research incorporates many components of clinical and translational research, including patient-oriented research, clinical trials, behavioral studies, development of new educational technologies, cost-effectiveness analyses, outcomes and health services research and implementation of best practices. Dr. Waterman collaborates with and mentors other researchers in nephrology, urology, health services research, economics, public health and nursing with expertise and interest in transplantation or education research. Her research has been supported by more than $25 million in federal grants and she has published more than 80 research articles and book chapters. Dr. Waterman also designs and tests the efficacy of new patient and living donor educational resources, including brochures, videos, mobile applications, social media interventions, and provider-based educational interventions in order to motivate kidney patients to receive transplants and living donors to donate. In 2009 she founded the non-profit suite of educational programs and trainings called Explore Transplant and Explore Living Donation, which enable transplant and living donation education to reach more individuals.
Dr. LaShara Davis
Dr. LaShara Davis is a Scientist in the Patient Engagement, Diversity, and Education Division representing both J.C. Walter Transplant Center at Houston Methodist Hospital and the Center for Outcomes Research at the Houston Methodist Research Institute. She is committed to research on patient-centered care, health message and education development and reducing racial and ethnic health disparities through communication.
Over the last 17 years, she has been engaged in research exploring the many facets of deceased and living donation. She uses a mixed methods approach that employs research tools including surveys, questionnaires, interviews and focus group methodologies to gather the patient perspective to inform health education and message design. She has worked at all levels of campaign development including formative stakeholder interviews and campaign material design. She previously worked as an Assistant Professor of Communication in Health and Faculty Liaison for Diversity, Equity, and Inclusion at DeSales University where she helped to launch campus-wide diversity initiatives and programs. She has also worked at RWJ Barnabas Health (formerly Saint Barnabas Medical Center) in the Renal and Pancreas Transplant Department as a Senior Researcher where she conducted research on educational strategies to reduce racial and ethnic health disparities in pursuit of transplant and explored methods to improve the design of the transplant center’s standard patient education.
After 5 years in an exclusively teaching role, she is excited about returning to research full time with a renewed focus on engaging in community-based participatory research design, patient engagement, and patient-centered education development.
Mary Beaucage’s bio
Mary Beaucage is Anishnaabe, from Nipissing First Nation, near North Bay Ontario. She spent her career working in Retail Management, honing her skills in hiring, coaching , and succession planning, as well as opening new stores, analyzing markets and business needs. She is a vulnerable and engaging storyteller who trusts you with her story.
Mary has type 2 diabetes and was diagnosed with end-stage kidney disease in 2013, for which she received dialysis. In March 2015, Mary received a kidney from her cousin Janice, who lives in Manitoba.
She is patient lead with CDTRP’s Theme 1 research. Mary co-chairs the Can-SOLVE CKD Network’s Patient Governance Circle and Indigenous Peoples Engagement Research Council. She holds leadership and board positions with several health based organizations. Mary has been a keynote speaker, panel member and presenter at provincial, national and international nephrology conferences. Mary is interested in educating and advocating in matters of Indigenous health, patient partnership, chronic kidney disease research, as well as organ donation and transplantation.
Dr. Tim Ramsay has a PhD in biostatistics and is a Senior Scientist with the Clinical Epidemiology Program of the Ottawa Hospital Research Institute, as well as an Associate Professor with the University of Ottawa’s School of Epidemiology and Public Health. He is Scientific Director of the Ottawa Methods Centre, a group of statisticians, information technology specialists, epidemiologists, and health-care economists that supports clinical research at The Ottawa Hospital and across Ontario through the CIHR-funded Strategy for Patient Oriented Research (SPOR). Dr. Ramsay has authored over 257 publications and has secured over $65 million in research funding as a PI and co-investigator.
Sarah Douglas lives in Ottawa and works as a Policy Analyst for HealthCanada. For the past three years, Sarah has been providing Secretariat support to the Organ Donation and Transplantation Collaborative, working closely with the governance committees as well as the Patient/Advocate Advisory Committee.
Ruth Sapir-Pichhadze’s bio
Dr. Sapir-Pichhadze is an investigator at the McGill University Health Centre and an Assistant Professor, Division of Nephrology and Multi-Organ Transplant Program, at McGill University, in Montreal. She completed subspecialty training in nephrology and kidney transplantation at the University of Toronto, and also completed the Eliot Phillipson Clinician Scientist Program and the Royal College of Physicians and Surgeons of Canada Clinician Investigator Program, where she undertook a Ph.D. in clinical epidemiology and health care research. Her doctoral studies focused on the pathogenesis, diagnosis, and prognosis of antibody-mediated injury secondary to the production of anti-human leukocyte antigen antibodies in kidney transplant recipients and candidates.
Caigan Du’s bio
Dr. Caigan Du is a scientist at the Vancouver Coastal Health Research Institute and an assistant professor in the Department of Urologic Sciences at the University of British Columbia. He received a Ph.D. degree in Biochemistry in UK and postdoctoral training in Immunology in USA. He is interested in the pathogenesis of kidney ischemia-reperfusion injury and transplant rejection, and molecular control of urinary malignancies. He has been studying the impact of kidney donor-derived factors on renal allograft rejection, and the molecular pathways of kidney injury and regeneration in experimental models. He is also interested in developing medical solution including drugs made from natural compounds for all kinds of health problems, including immune disorders, organ preservation, kidney failure and urinary cancer. He is the PI of many grant supports from the Kidney Foundation of Canada and the Canadian Institutes of Health Research.
Mamatha Bhat’s bio
Mamatha Bhat is a scientist in the Ajmera Transplant Centre at the UniversityHealth Network and Assistant Professor at University of Toronto’s Division of Gastroenterology & Hepatology. She completed her medical school and residency training at McGill University, followed by a Transplant Hepatology fellowship at Mayo Clinic and PhD in Medical Biophysics through a CIHR Fellowship for Health professionals.
Micheal Khoury’s bio
Michael Khoury is a pediatric cardiologist and Assistant Professor at the Stollery Children’s Hospital, University of Alberta. He completed his pediatric residency at the University of Toronto and pediatric cardiology fellowship at the University of Toronto and Alberta. He underwent subspecialty fellowships in Pediatric Preventive Cardiology at Cincinnati Children’s Hospital Medical Center (CCHMC) and Advanced Heart Failure and Transplantation at CCHMC and University of Alberta. He is a co-lead of the Kawasaki Disease/MIS-C clinic at the University of Alberta and his research interests focus in cardiac rehabilitation, cardiac Allograft Vasculopathy, lipid disorders, and hypertension.
James Lan’s bio
Dr. Lan is an Assistant Professor jointly appointed to the UBC Department of Pathology and Laboratory Medicine and the Department of Medicine, Division of Nephrology. He is the Medical Director of the HLA Laboratory in Vancouver, and a transplant nephrologist at the Vancouver General Hospital. Dr. Lan is the recipient of a Michael Smith Scholar award, holding multiple research grants which support the development and application of new technologies to improve donor-recipient HLA compatibility. A major focus of his current research funded by the Kidney Foundation of Canada aims to innovate new solutions for highly sensitized patients on the kidney waiting list.
Carrie Thibodeau’s bio
Carrie Thibodeau has served as one of the project leads for the Improving Engagement and Empowering Patients on their Transplant Journey project. Her educational background is in the fields of applied health sciences and communications, and the focus of her professional career has been on kidney health. She has worked closely with both patients and medical professionals for many years, and she has collaborated on multiple projects with the Kidney Foundation of Canada. This project has been an opportunity to be part of a team responsible for ensuring that patients’ lived experiences are central to the decisions being made about how best to manage organ donation and transplantation in Canada.
Kristi Coldwell’s bio
Holly Mansell’s bio
Holly Mansell is an Associate Professor in the College of Pharmacy and Nutrition at the University of Saskatchewan. She is a pharmacist who specializes in transplantation, but these days most of her time is spent on research and teaching pharmacy students. Her research focuses mostly on transplantation, patient education, patient-oriented research and cannabis and youth. She is also working on a Ph.D. in Health Sciences and her family is really looking forward to her finishing it up later this summer.
Maria J. Santana’s bio
Dr. Maria J. Santana is a health services researcher, patient and family-centred care scientist, an Associate Professor in the departments of Pediatrics and Community Health Sciences at the Cumming School of Medicine, University of Calgary.
Dr. Santana has received training in clinical pharmacy (BPharm, MPharm, London School of Pharmacy, UK, Universidad La Laguna, Spain), public health and clinical epidemiology (PhD, University of Alberta, Canada). Her research focuses in developing novel methods to integrate the voice of patients and family caregivers in health care and health service research to improve health and health care. The methods advance person-centred care and patient-oriented research.
Murdoch Leeies’ bio
Dr. Leeies is an organ donation, critical care medicine and emergency medicine specialist physician based in Manitoba. Trained as a clinician investigator, he serves as the Director of Research for the Department of Emergency Medicine at the University of Manitoba.
Dr. Leeies leads a collaborative program of research with a focus on promoting health equity in organ and tissue donation and transplantation. This intersectional research program pairs with his clinical work as an organ donation specialist physician with the Transplant Manitoba Gift of Life program. Dr. Leeies extends his commitment to the principles of equity, diversity, and inclusion (EDI) through academic and clinical service as the Director of EDI nationally for the Canadian Critical Care Society, and the Chair and Co-Chair (respectively) of the EDI committees for Critical Care Medicine and Emergency Medicine in Manitoba.
Dr. Leeies was recently awarded the Preparing for Research by Engaging Public and Patient Partners (PREPPP) Award from the University of Manitoba Centre for Healthcare Innovation in support of the development of a 2SLGBTQIA+ Patient & Public Advisory Team which will partner in the development of patient-centered research that explores the inequities that 2SLGBTQIA+ persons face in the Canadian organ and tissue donation and transplantation system. Through this work Dr. Leeies hopes to generate knowledge that can inform the reformation of structural and systemic elements of the health system that uphold these inequities.
Joanna Mitchell’s bio
Davina Banner’s bio
Dr. Davina Banner is an Associate Professor at the University of Northern British Columbia. Davina leads an interdisciplinary program of research that is focused on cardiovascular and rural health, along with research that advances the science and practice of integrated knowledge translation and patient-oriented research. Through her research, Davina seeks to improve the health of Canadians living with complex health conditions, along with studying methods and practices that support meaningful co-production in research.
Leonard Hodder’s bio
Leonard Hodder lives in Brampton, Ontario and works as a Project Manager for his family business. Len is a non-directed living liver and kidney donor, and enjoys volunteering with various organizations, including the CDTRP, UHN’s Centre for Living Organ Donation, the Transplant Ambassador Program, and in the lung transplant physiotherapy room at Toronto General Hospital.
Rienk de Vries’ bio
Rienk de Vries lives in Oakville and runs a consulting firm that has provided services in the water industry for more than 15 years in Canada, the US and the Caribbean. Rienk has been a patient researcher and Patient, Family and Donor (PFD) representative on CDTRP Theme 5: Restoring Long-Term Health for a little more than a year. He had a heart transplant in December 2012 and has been involved in a number of transplantation related research projects over the past 10 years.
Linnea Franson’s bio
Alicia Murdoch’s bio
Alicia is a certified Clinical Research Professional (ACRP-CP) with over 12years of clinical research experience. Prior to joining Can-SOLVE CKD, she worked as a research coordinator, review manager at a Research Ethics Board (REB) and ethics and regulatory coordinator. Her past employment experiences have given her a wide breadth of knowledge about the research process. In her current role as a Can-SOLVE CKD Network project manager, she is responsible for the Canadian Nephrology Trials Network and Can-SOLVE CKD Network Pediatric Committee, helping these core infrastructures move their initiatives and ideas forward in the pursuit of improving the lives of those affected by chronic kidney disease.
Lynne Feehan’s bio
Lynne Feehan, PhD, is a health researcher and the Knowledge Translation Lead at the BC SUPPORT Unit, whose passion is supporting patient-partners and health researchers to learn how to collaborate and do meaningful partner engagement across health research. She is also a physiotherapist with many years working in the health system. Her lived experience as a researcher and clinician have helped Lynne learn how to navigate the opportunities and challenges when doing, or using findings from, health research in health care and service delivery settings.
Larry Mróz’s bio
Larry Mróz, PhD, is a Patient Engagement Coordinator with the BC SUPPORT Unit. In this role he helps health researchers in BC to work with non-researchers, including patients, who want to understand what health research is being done, why the research may be important and how they might contribute to making research more relevant. Larry is also a health researcher. His health research has focused on understanding how people experience living with various health conditions and how their experiences may affect their health behaviours.
Aggie Black’s bio
Agnes (Aggie) Black is the Director, Health Services & Clinical Research andKnowledge Translation at Providence Health Care. Working closely with Patient Family Partner advisors, Aggie supports clinicians in research projects, including leading the Practice-based Research Challenge. Aggie completed her nursing degree at the University of Washington, Seattle, and her Master of Public Health at Simon Fraser University. She is an adjunct professor at the UBC School of Nursing and Research Associate, Centre for Health Evaluation & Outcome Sciences (CHEOS).
Heather Badenoch’s bio
Heather Badenoch is a non-directed living liver donor and communications strategist. As the president of Village PR, she provides strategic communications direction and training to not-for-profit clients in community and health. An active transplant volunteer, Heather helps transplant candidates find living donors by running their public appeals, small and large, pro-bono. She also mentors potential living donors on the path to living donation. Heather is a volunteer with the UHN Centre for Living Organ Donation and the Canadian Donation and Transplant Research Program. She and her spouse adopt rescue dogs and volunteer together with Community Veterinary Outreach, a group providing free veterinary care to the pets of people who are homeless.
Sylvain Bédard’s bio
Sylvain Bédard, first heard the word transplantation in 1980 when he was diagnosed with HCM (hypertrophic cardiomeapathy), a heart disease that had just killed his 18-year-old sister. Sylvain will have to struggle for 20 years before he gets the gift of life.
Heart transplant recipient in 2000, he then climbed up Mont-Blanc (4800m) in 2003. In December 2004, he became the first heart transplant recipient in the history to climb over 6000m in Bolivia, Sajama Mountain at 6500m. He spoke and publish his journey at the International Society of Heart and lung transplant, Canadian Cardiology Society, Canadian association of cardiac Rehab… to name just Sylvain medical adventure as a patient includes arrhythmia, 3 times peace-defibrillator implant, embolism, major disc and many other health problems… But always with a smile!
Sean Delaney’s bio
Sean Delaney is based in Edmonton, Alberta and has worked for Canadian Blood Services for the past 14 years, developing the policies and implementing many of the interprovincial organ sharing programs Canadians have come to rely upon: Kidney Paired Donation, the Highly Sensitized Patient kidney sharing program, and soon to be implemented interprovincial heart and liver sharing programs. He has also overseen several key leading practice initiatives in those year, including current work in Optimizing Kidney Allocation for extended criteria donors, and on developing recommendations on liver transplant eligibility for patients with Alcohol Use disorder. He is also a lifelong kidney patient and 2-time kidney transplant recipient, receiving his most recent transplant from a generous living donor in October 2020.
Teresa Atkinson’s bio
Teresa has the privilege to work, live and play within the ancestral, traditional and unceded territory of the Syilx Okanagan Nation. She has lived with kidney disease for 35 years and have spent more time on dialysis than living with a successful transplant. After a 17 year wait on dialysis, she was lucky enough to receive her 3rd miracle transplant from the highly sensitized list.
As a person with a lifetime of lived experience with a chronic disease, Teresa is a passionate advocate for empowering others and building community. She has 25 years of volunteer experience with various kidney related heath charities; raising public awareness, peer engagement, promoting organ donation, strategic planning, and governance. She loves connecting people within the Kidney Community and helping them along their kidney journey.
“Research has become an exciting area where I can make a difference for patients and clinicians by sharing my patient journey and insights. My recent engagements with various research projects have been some of the most satisfying work I’ve done.”
Marc Bains’ bio
Marc Bains is the Co-Founder and Vice President of HeartLife Foundation, a patient-driven charity whose mission is to transform the quality of life for people living with heart failure by engaging, educating, and empowering a global community to create lasting solutions and build healthier lives. Marc has been actively engaged in a wide range of health research, including co-leading studies exploring patient-oriented research methods and practices.
Patient-oriented knowledge mobilizations: Shifting the dial
on knowledge creation and translation
This presentation will reflect upon the findings of two research studies exploring research partnerships within health research networks. We will draw upon the data collected from diverse stakeholders engaged in 10 Canadian research networks, identifying how perspectives of knowledge are shifting and how patients and family members are assuming increasingly important roles in the development and implementation of research. We will highlight opportunities for patient-oriented knowledge mobilization and the critical role of patients and the public in fostering research with local and global reach.
Javairia Rahim’s bio
Javairia Rahim is a MSc candidate in Dr. Jonathan Choy’s Lab at Simon Fraser University studying the role of Cell Surface Engineering in the prevention of transplant rejection. She has been a CDTRP member since Summer 2021 and is also a member of the Society of Women in Science and Technology (SCWIST).
Paraag Trivedi’s bio
Paraag Trivedi has been passionate about serving his community since a young age, being involved in organizations such as the Kids Help Phone Student Ambassador program and the Saskatchewan Elocution and Debate Association. After a shocking diagnosis of kidney failure, he received a kidney transplant at the age of 15 from his father. Once healed, he wanted to try and continue service to his community as best he could, and, in 2012 was accepted in the University of Saskatchewan College of Pharmacy, where he was fortunate enough to contribute to a patient education project for patients in renal failure and those receiving transplants. In his time at the U of S, he continued to serve as the Finance Officer for the Canadian Association of Pharmacy Students and Interns. Graduating in 2016, he entered community practice, while also contributing to research projects, mentoring and teaching pharmacy students, acting as a guest speaker for the patient experience of the journey of a kidney transplant patient, as well as regular continuing education presentations for healthcare workers. Paraag also has made it a point to speak with patients in his area, such as presenting to retirement homes, assisted living facilities and seniors groups about various health topics, and also currently sits on the Board of Directors for the Pharmacy Association of Saskatchewan. For his dedication, impact and commitment to the profession, Paraag was awarded the “New Horizons Award” by the Pharmacy Association of Saskatchewan in 2021.
Terry Steeves-Gurnsey’s bio
Terry Steeves-Gurnsey received her Bachelor of Science in Biochemistry from the University of Saskatchewan in 1974 and became a Certified Virology Technologist from the Royal University Hospital in 1976. She received a kidney transplant in 2004 at St. Paul’s Hospital. She continued to work until 2018, when she retired from the Canadian Food Inspection Agency.
Nicola Rosaasen’s bio
Nicola meandered through the Biology Department at the University of Saskatchewan until entering the College of Pharmacy – with a lifelong love of all things biologically quirky. After graduation in 1992, she completed a pharmacy residency and was hired as a staff pharmacist at St, Paul’s in Saskatoon. In 2002, she was offered a position at the Saskatchewan Transplant Program. At Transplant, Nicola found a professional home – a place of ongoing learning and research but best of all a place that encouraged the development of long term relationships with so many wonderful patients. She has been honoured with a number of professional awards over the years, including Canadian Society of Hospital Pharmacists (Sask Branch) 2018 Pharmacist of the Year. She is grateful for the recognition by her peers, but most honored by the willingness of her patients to give of themselves – their time and their stories to the many research and educational projects over the years.
Sean Dicks is a clinical psychologist who has 20 years’ experience supporting both families of organ donors and transplant recipients. While it is rare for him to have contact with a donor family and recipient linked to the same organ donation-transplantation event, his contact with families who have lived experience with organ donation on the one hand, and patients who have received transplants on the other hand has provided opportunities to explore how their journeys become linked when they attempt to make sense of and find meaning in their respective crises.
Sean has recently completed his PhD at the University of Canberra, Australia. His study explored the bereavement experiences of families of potential organ donors. In preparation for the empirical component of his research, he completed several systematic literature reviews which each explore aspects of the experiences of families of organ donors, transplant recipients, and healthcare professionals.
One of those reviews sought to understand the relationship that develops between families of organ donors and transplant recipients. Drawing on literature from both sides of this relationship, a number of interesting observations were made. His presentation will focus on these observations, his experiences supporting families of organ donors and transplant recipients, and the findings of recent international studies that have explored the relationship and needs of the parties involved.
Shaifali Sandal is a Transplant Nephrologist, an Associate Professor at theMcGill University Health Center, and an Investigator at the Research Institute of the McGill University Health Centre. She received her post-graduate training at the SUNY Upstate Medical University and the University of Rochester followed by a Transplant Nephrology fellowship at the McGill University Health Center and a research fellowship at the Johns Hopkins Medical Center. Her clinical and research interests are to improve rates of and access to living donor kidney transplantation and re-transplantation using health system approaches. She has over 30 peer-reviewed publications and has received a Clinical Faculty Development Research Grant from the American Society of Transplantation, a Kidney Health Research Grant from the Kidney Foundation of Canada, and a Research Innovation Grant from The Canadian Donation and Transplant Research Program to support this work.
Dr. Tennankore is a nephrologist and associate professor of medicine. His clinical expertise includes chronic kidney disease and home dialysis modalities (home hemodialysis and peritoneal dialysis). In addition to resident clinical education, he has an interest in research methodology and runs the research rotation for nephrology trainees.
Dr. Tennankore is interested in studying and improving outcomes of patients after initiation of dialysis and transplantation, and he is a part of national and international research initiatives in home hemodialysis. He is involved in clinical trials and conducts a number of prospective cohort studies in nephrology.
Dr. Tandon is an Associate Professor of Medicine, Co-Director of the Cirrhosis Care Clinic, Transplant Hepatologist and lead of the Cirrhosis Care Alberta quality improvement program. She obtained her training at the University of Alberta, the Hospital Clinic in Barcelona and Yale University. Her clinical practice and research are focused on cirrhosis with research interests including cirrhosis related complications, malnutrition, frailty, exercise therapy, palliative care, integrative health approaches such as meditation and knowledge translation. It is her career goal to provide wholistic, interdisciplinary, evidence based, patient-centered care through education, empowerment, engagement and team-work.
Susan Q. McKenzie
Susan is an experienced communications and fundraising professional who has worked to advance a number of charities across Canada. In 2010, after a year on dialysis, she received a new kidney from her husband’s sister. The fear and isolation of that experience planted the first seeds in her mind that much more needed to be done to help others with kidney disease. Two of Susan’s three daughters have also been diagnosed with a rare genetic mutation (MUC1) which ultimately leads to kidney failure.
When Susan’s middle daughter needed a kidney transplant in 2017, helping her daughter try to navigate the healthcare system in search of a living donor, further underscored the critical role of patients and donors stepping up to help each other through this very difficult time. Not being a person to step away from a challenge, Susan began working with fellow patients, kidney donors, and researchers to establish the Transplant Ambassador Program (TAP), a volunteer driven, peer support program which has been helping kidney patients and donors navigate the transplant journey since 2017.
Today, TAP has over 150 Ambassadors, and has been launched in all 27 renal centres in Ontario. TAP recently launched additional innovative features to support patients and living donors, including a new Ambassador Directory, and a first-in-Canada service, Patients Seeking Donors, which allows patients to post a profile on a safe and secure website to help them in their search for a living donor.
Francis Migneault is a research associate in the Nephrology, Transplantation and Renal Regeneration Research Unit at the CHUM Research Centre in Montreal. He is also the Education and Training platform co-lead of the Canadian Donation and Transplantation Research Program (CDTRP). He completed his undergraduate degree in biochemistry at the University of Sherbrooke. He obtained his Ph.D. in Biomedical Sciences from the University of Montreal in the Cellular and Molecular Biology of the Lung Research Unit at the Clinical Research Institute of Montreal (IRCM). He then pursued his postdoctoral studies by investigating the importance of paracrine mediators, particularly extracellular vesicles, released by apoptotic endothelial cells on blood vessel function in the context of transplantation. In addition, he is investigating the potential of these vesicles as biomarkers of vascular rejection in kidney transplant patients. When not in the lab, Francis’ main interests are woodworking and the joys of the great boreal forest.
Dawn Richards, PhD, is the founder of Five02 Labs Inc., and Director of Patient and Public Engagement at Clinical Trials Ontario. With a PhD (Analytical Chemistry) from the University of Alberta, and experience in a variety of roles during the past 20 years, it is her diagnosis with rheumatoid arthritis fifteen years ago that started her journey to combine her passion for science with making the most of her diagnosis. In her role at CTO, Dawn is charged with executing on CTO’s strategic pillar of patient and public engagement.
As a patient, Dawn is Vice President of the Canadian Arthritis Patient Alliance, a Research Ambassador for the Institute of Musculoskeletal Health and Arthritis (of the Canadian Institutes for Health Research), and was a member of The BMJ’s Patient Advisory Panel and the first Patient Advisor of the Canadian Medical Association’s Wait Time Alliance. She advocates for disease awareness, access to treatment and research options, and including patients as partners on research teams and in decision-making.
Amina Silva is a registered nurse and is in the last year of her PhD at Queen’sUniversity. Her clinical background is focused on end-of-life care, kidney transplantation and eye donation processes. Her research program is focused on organ donation processes, end-of-life and survivorship care and simulation-based educational strategies. Amina is also a research coordinator for the BRiC program (Studying Burnout and Compassion Fatigue among OTDCs in Canada), a research assistant at Queen’s University, and a simulation facilitator at University of Ottawa.
Quality Improvement Tools to Manage Deceased Organ Donation Processes: A Scoping Review
Deceased organ donation is a highly complex and multi-phased process, which makes it prone to adverse events and errors. Appropriate quality improvement tools should be used to ensure proper flow and safety throughout the donation process. We conducted a scoping review to map the existing evidence on the use of quality improvement tools to manage deceased organ donation process. A total of 40 references were included and the tools identified included checklists, algorithms, flowcharts, charts, pathways, decision tree maps and mobile apps. These tools were applied in the following phases of the organ donation process: (1) potential donor identification; (2) donor referral; (3) death determination; (4) potential donor assessment; (5) donor management; (6) donor risk assessment; (7) withdrawal of life sustaining measures; (8) organ retrieval; and (9) overall organ donation process. By mapping existing tools, we aim to facilitate both clinician choices among available tools, as well as research work building on existing knowledge.