The CDTRP’s COVID-19 research has centered on addressing patient, family, and caregiver priorities. Through National Workshops, the CDTRP has engaged the transplant community to identify and prioritize effective strategies for transplant recipients, families, and caregivers to support their recovery of quality of life during the pandemic.

Despite vaccinations and therapeutics, transplant recipients remain at high risk of severe COVID-19 outcomes. Recipients, families, and caregivers are also at higher risk of experiencing extreme stress and mental health concerns and bearing the financial burden associated with the pandemic.

In response, the CDTRP has established a national, multidisciplinary team to address emerging challenges related to COVID-19 experienced by organ and stem cell transplant recipients, families, and caregivers.

Patients and families can make a difference by participating in research. The information obtained from TREAT-COVID will be used to help inform clinical treatment, policy decisions, and enhance patients, families, and caregivers’ understanding of COVID-19 and what it means for them.

Knowledge gained from this study will also support transplant centers in understanding the ongoing challenges faced by recipients, their families, and caregivers. The goal is to improve the well-being of transplant recipients and their families during this ongoing pandemic and future public health crises.

Research Priorities

TREAT-COVID will study effective strategies for addressing the impacts of COVID-19 in transplant recipients, including clinical treatments, mental health, and economic impacts for patients, families, and caregivers.

Led by Drs. Dima Kabbani (University of Alberta), Sarah Shalhoub (London Health Science Centre), and Catherine Burton (University of Alberta, objective #1 will be met by collecting clinical information from study participants. Data will be captured through online questionnaires and patients’ medical records.

Led by Drs. Caroline Piotrowski (University of Manitoba, pediatrics) and Istvan Mucsi (University Health Network, adults), objective #2 will be met by collecting physical and emotional quality-of-life information captured through Patient-Reported Outcome Measures (PROMS). Data will be captured through a standardized screening tool that identifies physical and emotional symptoms.  The study will also implement qualitative measures to understand the facilitators, barriers, and gaps in resources that help ease the negative impacts of COVID-19 on mental health.

Led by Dr. Kednapa Thavorn (Ottawa Hospital Research Institute), objective #3 will be met by collecting demographic and economic information, including the patient’s caregiver age, ethnocultural background, education, income, employment status, and urban/rural residence.

 TREAT-COVID aims to recruit over 5000 participant including adult organ and stem cell recipients and their family members, and pediatric organ transplant recipients and their family members. Joining the study and sharing your voice and experience is key to advancing our understanding of COVID-19’s impacts on transplant patients, implementing evidence-based recommendations, and improving the overall transplant experience for recipients, families, and caregivers. 

Recruitment

You can make a difference by joining TREAT-COVID and sharing your experience. Your voice will inform better care for transplant patients, contribute to a better understanding of how COVID-19 continues impacting patients and their families, and improve outcomes for you and your loved ones.

To participate in TREAT-COVID, you must meet the below inclusion criteria.

  • 18 or older.
  • Provide informed consent in clinic or online via the TREAT-COVID Data Platform
  • Organ transplant recipient on at least one immunosuppressive.
  • Followed by one of the participating transplant centers:
    Vancouver Coastal Health
    University of Alberta Hospital
    London Health Sciences Centre (Ontario)
    University Health Network (Ontario)
    Centre hospitalier de l’Université de Montréal
    Institut de cardiologie de Montréal
    Université Laval
  • 18 or older.
  • Provide informed consent in clinic or online via the TREAT-COVID Data Platform.
  • Allogeneic (received donation from someone else) recipient receiving ongoing immunosuppressants.
  • Autologous (received stem cell from yourself) recipients within 12 months from the date of stem cell infusion on at least one immunosuppressive (all genders).
  • Followed by one of the participating transplant centers:
    Vancouver Coastal Health
    London Health Sciences Centre (Ontario)
    University Health Network (Ontario)
    Université Laval
  • 17 or under
  • Family member/caregiver must enroll
  • Parent and child provide informed consent in clinic or online via the TREAT-COVID Data Platform
  • Organ transplant recipient on at least one immunosuppressive.
  • Followed by one of the participating transplant centers:
    BC Children’s Hospital
    Stollery Children’s Hospital (Alberta)
    The Hospital for Sick Children (Ontario)
    Montréal Children’s Hospital
  • The associated transplant recipient must be followed by one of the participating centres and be enrolled first:
    • Vancouver Coastal Health
    • University of Alberta Hospital
    • London Health Sciences Centre (Ontario)
    • University Health Network (Ontario)
    • Centre hospitalier de l’Université de Montréal
    • Institut de cardiologie de Montréal
    • Université Laval
  • The associated transplant recipient must be followed by one of the participating centres and be enrolled first
    • Vancouver Coastal Health
    • London Health Sciences Centre (Ontario)
    • University Health Network (Ontario)
    • Université Laval
  • The associated transplant recipient must be followed by one of the participating centres.
    • BC Children’s Hospital
    • Stollery Children’s Hospital (Alberta)
    • The Hospital for Sick Children (Ontario)
    • Montréal Children’s Hospital
  • The caregiver must live in the same house as the transplant recipient at least 50% of the time.
  • Study participants will be asked to complete 3 online questionnaires every three months for two years from anywhere with internet access.

  • Questionnaires will gather information about your physical health, mental well-being, and financial impact on transplant participants and their family members and/or caregivers during the pandemic.

  • If you experience any COVID-19 related symptoms, ADD TEXT

  • All study data will be stored and collected on the TREAT-COVID Data Platform. Personal health information will remain confidential and secure in accordance with ethical standards.

Community Engagement

Help us in spreading awareness of our TREAT-COVID study across your communication platforms and social networks! We're dedicated to producing research insights and recommendations that reflect the diverse transplant community in Canada. Whether you are a patient, transplant patient facing organization, or are in the non-transplant health sector, Join us in making a difference!

If you would like to know more about TREAT-COVID or help promote the study in your newsletter, social media channels, website, or local events, download our communications toolkit or contact us to request a virtual presentation.

Email us at Info@CDTRP.ca

National Prioritization Forums

Engaging the donation and transplant community is at the heart of TREAT-COVID. The CDTRP has hosted several national forums and workshops to ensure research is reflective of patient, family, and caregiver priorities.

TREAT-COVID will host 4 National Prioritization Forums. Each Forum provides a venue for the research team to engage with stakeholders in the transplant community, including patients, families, caregivers, clinicians, trainees, researchers, government, and industry. The Forum helps identify the most urgent and emerging research questions and issues confronting transplant patients, families, caregivers, and the broader transplant ecosystem. Below, you will find the results of our completed National Forums and the tentative dates for upcoming Forum’s. These are open to the public.

National Prioritization Forums are held every six months, and the first Forum was held during CDTRP’s June 2023 Patient, Family, and Donor Research Forum, on June 9, 2023. This was the fifth National Forum hosted by CDTRP since 2021, with previous forums influencing the direction of TREAT-COVID and the PREVent-COVID-19 study.

The Forum’s attendees included patients, families, caregivers, health professionals, researchers, and clinicians. Together, they participated and identified the most urgent emerging research questions and issues confronting transplant patients, families, and caregivers.

Download the Prioritization Forum Report here.

Early experience from our first site to begin recruitment has highlighted several and significant barriers to recruitment, including COVID-fatigue, questionnaire-related fatigue, participant, and study coordinator burden. Concerns have been raised how best to reach the target number of participants in order to achieve the study’s goals. The 2nd National Forum provided a venue to engage with stakeholders in the transplant community, including patients, families, caregivers, clinicians, trainees, and researchers to address potential approaches to these barriers.

Download the Prioritization Forum Report here.

Frequently Asked Questions

  • We know these past four years may be hard to talk about. COVID has made many in the transplant community feel powerless, even abandoned. This research is one way we can work together for change.
  • Even though many have returned to their everyday routines, and public health measures have been rolled back, COVID-19 has not disappeared.
  • COVID-19 continues to evolve, leading to new variants that may spread more quickly or cause different symptoms.
  • As a transplant recipient, you take medication every day to protect your transplanted organ. These medications, however, also lower your immune system and put you at higher risk of getting sicker and other complications.
  • Although vaccines are available, it is not clear how much protection is provided to transplant recipients.
  • By enrolling in TREAT-COVID, your participation will allow researchers to learn from your experience dealing with COVID-19 and the challenges and develop strategies to improve the lives of other transplant recipients.
  • Although some transplant recipients have contracted COVID-19 without experiencing severe reactions, others remain at high risk for serious complications. Others have had COVID-19 and are struggling to get back their quality of life and wellness. Sometimes it is the mental health of family members that is a major issue. We need to learn from your experience so we can implement better support and resources for patients and their families.
  • Even after receiving the COVID-19 vaccine, immunocompromised transplant recipients must protect themselves.
  • While vaccines offer protection, research shows that transplant recipients may not build up the required protection.
  • This means you could still be at risk of severe illness, and we need to understand what policies, programs, and resources are necessary to keep you safe.
  • For these to be relevant to you and others in the transplant community, we need to learn from your experiences.
  • Severe illness is only one outcome of COVID-19. We’ve heard from patients, families, and caregivers that the virus has also affected their mental and financial well-being. Many still need support returning to their normal routines and strategies to regain their quality of life.
  • By participating, you can help us improve the experience and health outcomes of transplant recipients and their families.
  • The transplant journey affects you, the recipient, and your family members.
  • We have heard from other families that knowing how best to protect their loved ones during COVID-19 has been difficult.
  • We’ve heard that transplant recipients and caregivers have different needs. Whereas transplant patients prioritized research questions related to clinical treatments for COVID-19, families and caregivers primarily focused on mental health and wellness and the need for resources.
  • Family members sharing their experiences can help identify gaps in the current support systems and resources.
  • This can lead to the development of better strategies and tools to support both patients and caregivers during COVID-19, the general transplant journey, and future health crises.
  • Each family or caregiver has unique needs and stressors. Understanding these needs through research can help transplant centres create more personalized and effective interventions, which could improve outcomes for both you and your loved one.
  • We have heard from other transplant patients, families, and caregivers that knowing what to do or where to access information during the pandemic remains difficult.
  • In the fourth year of the pandemic, the transplant community is still learning to survive and navigate COVID-19. We heard that patients experience communication issues with their transplant centres. Part of this research aims to develop better communication mechanisms between transplant recipients/families/caregivers and their centres.
  • Like other research, your participation will not immediately benefit you, but your voice will help inform future programs/policies/interventions that could benefit people like you in the future.
  • By participating in this study, transplant patients and their families will help us understand how to improve the lives of future patients in this ongoing pandemic and future emergencies.
  • Note: The way you are treated for COVID-19 or other conditions will not change because you are participating in this study.
  • TREAT-COVID is about generating new knowledge to help save the lives of transplant patients while also developing evidence-based strategies to improve their quality of life and wellness.
  • Many transplant recipients/families/caregivers were already experiencing mental health and financial challenges. We’ve heard from patients/families/caregivers that the pandemic intensified mental health and financial burdens. TREAT-COVID aims to develop strategies and resources to support patients when they need it most.
  • For example, we’ve heard from the transplant community that challenges patients/families/caregivers experience include:
    • Anxiety/fear/depression
    • Information overload and lack of tools
    • Social isolation
    • Government and healthcare policy
    • Family impacted.
    • Disappointment and anger
  • We understand the unique challenges faced by transplant patients, especially during the early days of the COVID-19 pandemic.
  • Your journey has been incredibly tough, and we recognize that you may not have received the support you needed. Your resilience and strength inspire us, which is why TREAT-COVID is needed.
  • You’re not alone, and your voice is needed to make sure recommendations meet your needs, as well as the needs of the transplant community.
  • Insights gained from such research can influence future public health policies and emergency responses, leading to better preparedness and support in future.
  • Your voice is essential in research. You have firsthand experiences during COVID-19 will provide researchers with invaluable insights only you can share.
  • When we hear from you and other transplant recipients/families/caregivers, we gain a deeper understanding of your needs, preferences, and challenges, which is crucial for developing more patient-centered approaches to care.
  • Your input and experiences aren’t just about gathering data; it’s about learning from your lived experiences to ensure that our research efforts are directly addressing your needs and improving the quality of life of transplant recipients/families/caregivers.
  • Your participation ensures that research outcomes are relevant, meaningful, and ultimately beneficial to the transplant community.
  • Once enrolled, you will be asked to complete a questionnaire every three months for two years.
  • The questionnaire is available online and can be accessed anywhere with internet access. We can help you enrol on the online data platform.
  • If you prefer, you can complete the questionnaire in paper form during your regular clinic visit, have it mailed to you, or complete it over the phone.
  • Once enrolled, you will be notified through a phone call, an automated email or from the online platform when it is time to complete study questionnaires. You can choose which reminder method you prefer when enrolling.
  • The first set of questionnaires during enrollment will take about 30 to 90 minutes to complete.
  • Regular follow-up questionnaires will take about 30 minutes. The information you enter into the questionnaires will be saved as you go.
  • It is not necessary to complete all the questions in one sitting.
  • These questionnaires will capture information about your health, COVID-19 infection and outcomes, emotional well-being, and economic situation.
  • For transplant recipients, researchers will do periodic review of your medical records at the time of the questionnaires to see if you have had any changes in your health.
  • If you are a transplant and develop symptoms that are relevant to COVID-19 or other respiratory viruses (cough, sneezing, fever, etc.,) or test positive for COVID-19 at any time throughout the study we ask that you contact the study staff to notify them as soon as possible.
  • Some people may feel uneasy answering questions about their health. You do not have to answer any of the questions that you are not comfortable with.
  • As a small token of our appreciation, you will receive a $15 stipend in the form of a gift card once you enroll in the study and complete the baseline questionnaires
  • Thank you for considering your participation in this study, and we understand your concerns about continuing and the time commitment. If you need support completing your questionnaire, someone from your local centre will be able to help you.
  • Your involvement is incredibly valuable to our research and other transplant recipients/families/caregivers.
  • By participating, you’re helping us gather information to improve COVID-19 treatment and preventive strategies specifically for immunocompromised individuals like yourself.
  • You are free to withdraw from the research study at any time for any reason.
  • If you do so, your medical care will not be affected in any way.
  • If you withdraw from the study early, we will keep any information that was collected previously, but we will not collect any new information.
  • Thank you for sharing your concerns about completing the mental health questions related to COVID-19.
  • It’s completely understandable questions about mental health and COVID-19 are overwhelming, especially given the additional challenges you’ve faced as a transplant recipient during the pandemic.
  • Please know that your well-being is our top priority, and the information you provide will be invaluable in helping us understand and address the mental health impacts of COVID-19 for transplant recipients like yourself.
  • If you feel comfortable, we encourage you to take the survey at your own pace. You do not need to complete the questions in one sitting, you can take breaks, and you do not have to answer any question that makes you uncomfortable.
  • Remember, your participation is voluntary, and your honest responses will contribute significantly to our efforts to improve support and resources for transplant recipients.
  • If you have any concerns or need support at any point, please don’t hesitate to reach out to us. We’re here to help you through this process and to make it as comfortable as possible for you. Your insights are incredibly valuable, and your health—both physical and mental—is of the utmost importance to us.
  • Thank you for expressing your concerns about how your data will be used and stored. It’s essential to us that you feel secure and informed about this aspect of the study.
  • Please rest assured that your privacy and the confidentiality of your data are our top priorities.
  • The study data we collect will be securely stored by the study doctor during and after the study.
  • We will also include a copy of your signed consent form in your clinical record so that doctors you see in the future will know you participated in the study.
  • We will keep the study data stored for at least 15 years after the end of the study.
  • Your study data will be coded (with a number) so that it no longer contains your name, address or anything else that could directly identify you.
  • Your coded study data will be recorded in the TREAT-COVID Database.
  • You have the opportunity to receive regular study updates by email – you can ask to receive updates during the enrollment process.
  • This project will be setting up optional focus groups and individual interviews with interested participants. These groups will meet virtually to discuss the impact COVID-19 has had on their lives. If you indicate that you are interested in participating in these groups you will be asked to sign an additional optional consent document.
  • Those who wish to receive study updates may be invited to provide feedback on whether they find them useful. However, providing feedback is not required to receive study updates.

If you would like to learn more about donation and transplant research or join different project, please visit The Canadian Donation and Transplantation Research Program’s website

Knowledge Mobilization

The CDTRP continues to leverage its infrastructure to understand the needs, concerns, and priorities of transplant families. Our goal is to provide accessible, trustworthy, and up-to-date information to support transplant recipients, families, and caregivers.

 
  • Ensure that transplant families stay updated on COVID-19  and how they affect transplant recipients, their families, and caregivers.

  • Encourage policymakers in government and healthcare settings to adopt evidence-based strategies that positively influence behavior and support improved outcomes for transplant recipients during the COVID-19 pandemic.

  • Amplify knowledge and awareness among transplant families, transplant focused organizations, as well as patient groups actively supporting better policy.

  • Empower transplant families to actively engage as partners in their own care.