The pandemic continues to be hard for many transplant recipients and their families and caregivers. COVID-19 vaccines are less effective for transplant recipients. This is due to their suppressed immune systems. As a result, transplant recipients who get COVID-19 are at a higher risk of hospitalization and death. Preventing severe disease in transplant recipients requires different strategies.

A New Study

The CDTRP’s COVID-19 research is centered on addressing patient, family, and caregiver priorities. We have engaged the transplant community to learn how research and policy can support the recovery of quality of life during COVID-19 and in future health concerns

A new study examines how COVID-19 continues to affect child and adult transplant recipients and their families and caregivers living in Canada. CDTRP will work with 11 transplant centres in Canada. The aim is to create a flexible national plan to inform better policies and improve patient health.

The study is called Addressing Critical Issues and Therapeutics Emerging in Transplantation in COVID-19 for Transplant Recipients (TREAT-COVID).

This study will:

  • Assess the safety and effectiveness of COVID-19 treatment options.
  • Look at the physical and mental health of organ and stem cell transplant recipients.
  • Analyze financial struggles of the transplant community associated with the pandemic
Patients and their families can help by joining research studies. The information gathered from the TREAT-COVID study will be used to improve treatment plans, guide important decisions, and help everyone better understand COVID-19 and its impact on their lives

Research Priorities

L'étude TREAT-COVID examinera des stratégies efficaces pour faire face aux impacts de la COVID-19 chez les receveurs de transplantations, en tenant compte des traitements cliniques, de la santé mentale et des répercussions économiques pour les patients, les familles et les aidants.

Dirigée par les Dres Dima Kabbani (Université de l’Alberta), Sarah Shalhoub (London Health Science Centre) et Catherine Burton (Université de l’Alberta), l’objectif n°1 sera atteint en recueillant des informations cliniques auprès des participants à l’étude. Ces données seront collectées au moyen de questionnaires en ligne et des dossiers médicaux des patients.

Dirigé par les Drs Caroline Piotrowski (Université du Manitoba, pédiatrie) et Istvan Mucsi (Réseau universitaire de santé, adultes), l’objectif n°2 sera atteint en recueillant des informations sur la qualité de vie physique et émotionnelle grâce aux Mesures des Résultats Déclarés par les Patients (PROMS). Les données seront recueillies au moyen d’un outil de dépistage standardisé qui identifie les symptômes physiques et émotionnels. L’étude mettra également en œuvre des mesures qualitatives pour comprendre les facteurs facilitants, les obstacles et les lacunes en matière de ressources qui contribuent à atténuer les impacts négatifs de la COVID-19 sur la santé mentale.

Dirigé par la Dre Kednapa Thavorn (Institut de recherche de l’Hôpital d’Ottawa), l’objectif n°3 sera atteint par la collecte de renseignements démographiques et économiques, tels que l’âge de la personne aidante du patient, son origine ethnoculturelle, son niveau d’éducation, son revenu, sa situation d’emploi et son lieu de résidence (urbain/rural).

L’étude TREAT-COVID vise à recruter plus de 5 000 participants, y compris des receveurs adultes de greffes d’organes et de cellules souches et les membres de leur famille, ainsi que des receveurs pédiatriques de greffes d’organes et les membres de leur famille. Participer à l’étude et partager votre voix et votre expérience est essentiel pour améliorer notre compréhension des impacts de la COVID-19 sur les patients transplantés, mettre en œuvre des recommandations factuelles et améliorer l’expérience globale de la transplantation pour les receveurs, les familles et les aidants.

Why Join the Study?

Most COVID-19 studies do not include the transplant community. And, without studies, the transplant community will not be included in government policies and recommendations. We need over 5,000 participants in this study to help us make informed policies. 

By participating in this study, you will:

  • Improve transplant care and help transplant recipients stay healthier.
  • Help transplant specialists learn how to better support transplant recipients and their families and caregivers.

Diseases like COVID-19 can come again in our lifetime. For more information, please review the FAQ section below.

Share this study, Choose Your Platform!

Recrutement

En participant à l’étude TREAT-COVID et en partageant votre expérience, vous pouvez faire une différence. Votre voix contribuera à l’amélioration des soins pour les patients transplantés, à une meilleure compréhension de la façon dont la COVID-19 continue d’avoir un impact sur les patients et leurs familles, et à l’amélioration des résultats pour vous et vos proches.

Are you eligible to participate?

    • Âgé de 17 ans ou moins

    • Un membre de la famille ou un aidant doit s’inscrire à l’étude.

    • Le parent et l’enfant doivent fournir un consentement éclairé en clinique ou en ligne via la plateforme de données TREAT-COVID.

    • Receveur d’une greffe d’organe prenant au moins un immunosuppresseur.

    • Suivi par l’un des centres de transplantation participants :

    • BC Children’s Hospital
    • Vancouver Coastal Health
    • Hôpital de l’Université de l’Alberta
    • Stollery Children’s Hospital (Alberta)
    • SickKids – Centre hospitalier pour enfants (Ontario)
    • London Health Sciences Centre (Ontario)
    • Réseau universitaire de santé (Ontario)
    • Centre hospitalier de l’Université de Montréal
    • Institut de cardiologie de Montréal
    • Université Laval
    • CHU Sainte-Justine (Hôpital d’enfants de Montréal)
    • Âgé de 18 ans ou plus.

    • Fournir un consentement éclairé en clinique ou en ligne via la plateforme de données TREAT-COVID.

    • Receveur d’une greffe d’organe allogénique (provenant d’un donneur) prenant des immunosuppresseurs à long terme.

    • Receveur d’une greffe de cellules souches autologues (provenant de vous-même) dans les 12 mois suivant la date de la perfusion, prenant au moins un immunosuppresseur (tous genres).

    • Suivi par l’un des centres de transplantation participants :

    • BC Children’s Hospital
    • Vancouver Coastal Health
    • Hôpital de l’Université de l’Alberta
    • Stollery Children’s Hospital (Alberta)
    • SickKids – Centre hospitalier pour enfants (Ontario)
    • London Health Sciences Centre (Ontario)
    • Réseau universitaire de santé (Ontario)
    • Centre hospitalier de l’Université de Montréal
    • Institut de cardiologie de Montréal
    • Université Laval
    • CHU Sainte-Justine (Hôpital d’enfants de Montréal)
  • 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 General Hospital
    • St. Paul’s Hospital
    • 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 General Hospital
    • St. Paul’s Hospital
    • 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.

What is involved in participating?

  • Les participants à l’étude devront remplir 3 questionnaires en ligne tous les trois mois pendant deux ans, et ce, à partir de n’importe quel endroit disposant d’une connexion internet.

  • Questionnaires will ask you about your physical health, mental well-being and the financial impact during the pandemic.

  • Toutes les données de l’étude seront stockées et recueillies sur la plateforme de données TREAT-COVID. Les renseignements personnels sur la santé demeureront confidentiels et sécurisés conformément aux normes éthiques.

Covid Testing by TREAT-COVID sites

How to access COVID-19 testing as part of the TREAT-COVID study 

COVID-19 can present with a range of symptoms. If you have one or more of the symptoms below, we encourage you to get tested. 

Fever or chills, Cough, Sore throat, Congestion or runny or stuffy nose, New fatigue (feeling very tired), Muscle or body aches, New headache, New loss of taste or smell, Shortness of breath or difficulty breathing, Feeling sick to your stomach (nausea) or vomiting, Diarrhea (loose stool).

Click below to find out how you as a transplant recipient can access Covid testing:

Rapid test are available free of charge at selected pharmacies. Locations are listed here:  https://www.bcpharmacy.ca/news/covid-19-rapid-test-kits-pharmacies

Ils sont également disponibles gratuitement dans certaines pharmacies. Les lieux sont indiqués ici: LIEN

If you are a transplant patient and develop symptoms that are relevant to COVID-19 or other respiratory viruses (cough, sneezing, fever, etc.,) as part of the study, we ask you to either come to the U of A Hospital to be swabbed for a panel of respiratory viruses or test at home with a kit we provide, if possible.

If you are a transplant patient and develop symptoms that are relevant to COVID-19 or other respiratory viruses (cough, sneezing, fever, etc.,) as part of the study, we ask you to test at home with a kit we provide, if possible.

Des tests rapides sont disponibles gratuitement dans les points de service locaux LIEN

Si vous êtes un patient greffé et que vous présentez des symptômes, nous vous demandons d’effectuer un test rapide et d’en informer votre équipe soignante ainsi que l’équipe de recherche, si le résultat est positif. Des tests rapides sont disponibles gratuitement dans les points de service locaux. LIEN

Des tests rapides sont disponibles gratuitement dans les points de service locaux. LIEN

Des tests rapides sont disponibles gratuitement dans les points de service locaux: LIEN

Les patients greffés symptomatiques sont éligibles aux tests PCR. Les lieux de dépistage sont indiqués ici: LIEN  

Ils pourraient également être disponibles dans votre centre de santé publique. Les lieux sont indiqués ici: https://www.phdapps.health.gov.on.ca/phulocator/

Les patients greffés symptomatiques sont éligibles aux tests PCR. Les lieux de dépistage sont indiqués ici: LIEN

Ils pourraient également être disponibles dans votre centre de santé publique. Les lieux sont indiqués ici: https://www.phdapps.health.gov.on.ca/phulocator/

Les patients greffés symptomatiques sont éligibles aux tests PCR. Les lieux de dépistage sont indiqués ici: LIEN

Ils pourraient également être disponibles dans votre centre de santé publique. Les lieux sont indiqués ici: https://www.phdapps.health.gov.on.ca/phulocator/

Engagement communautaire

Aidez-nous à faire connaître notre étude TREAT-COVID sur vos plateformes de communication et vos réseaux sociaux! Nous nous engageons à produire des résultats de recherche et des recommandations qui reflètent la diversité de la communauté canadienne de la transplantation. Que vous soyez patient, organisme représentant des patients transplantés ou que vous travailliez dans le secteur de la santé non relié aux transplantations, joignez-vous à nous pour faire une différence!

Pour en savoir plus sur l’étude TREAT-COVID ou pour la promouvoir dans votre bulletin d’information, vos réseaux sociaux, votre site Web ou vos événements locaux, téléchargez notre trousse de communication ou contactez-nous pour demander une présentation virtuelle.

Share this study!

Foire aux questions (FAQ)

The TREAT-COVID study would like to understand the ongoing impact of COVID on transplant recipients and their families. This means it is important for us to know when study participants have COVID. If you are a transplant recipient and develop COVID-like symptoms at any time during the study, we encourage you to get tested, and let us know about positive results through your participant portal. Both you and your enrolled family member then will be asked to complete questionnaires that will help determine the impact of illness and how it relates to treatments, mental health and quality of life, and financial burden.

  • 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