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Manuel and Suzanna are both kidney transplant recipients and employed at the Foundation.

Would you like to share your views to help improve programs and services for patients, or help researchers gain a better understanding of the challenges of living with kidney disease? You are at the right place! Browse down below to see current opportunities.


Current opportunities

  • Participate in a survey about cannabis use and symptoms in patients with kidney disease
    The health benefits of cannabis in patients with kidney disease are unknown. We are studying cannabis for the treatment of symptoms related to kidney disease.

    This is a survey designed by patients for patients to: 
    • Collect information about cannabis use for symptom relief in kidney disease.
    • See if there is interest for clinical trials for cannabis in kidney disease.
    Participation is anonymous and all responses are confidential. The survey will take approximately 5-10 minutes to complete.

    To participate please visit https://www.surveymonkey.com/r/TCCWJFX

    If you have any questions, please contact:
    Dr. David Collister
    Email: David.Collister@phri.ca
  • Join the international SONG-CKD Delphi Panel!
    We invite you to participate in a new Delphi Survey to understand what outcomes are important to patients, caregivers, family members and health professionals for research (clinical trials) in people with chronic kidney disease.

    The focus of the survey is on chronic kidney disease (not yet requiring dialysis or kidney transplant). Patients receiving dialysis or have received a kidney transplant are also welcome to participate and will be asked to reflect on your past experiences before needing dialysis or transplantation. The Delphi survey includes two rounds and each survey will take about 10 minutes to complete.

    If you have an interest in chronic kidney disease and would like to have a say about what is important to you, please click on this link to start Round 1 of this survey: 

    Start SONG-CKD Delphi Survey - Round 1

    The survey is voluntary and all participants will receive a report of the final results. Thank you so much for considering.
  • Be the first to test a novel website
    The University of Calgary is seeking volunteers to test a novel website to support adults with chronic kidney disease (CKD).  The website provides information on topics relevant to managing CKD; the ability to create a customized food list and a tailored question list to bring to your health care provider; as well as resources to support you.

    Who can participate? You are eligible if you:
    • Have chronic kidney disease and not on dialysis
    • Are 18 years of age or older
    • Can read and write English
    • Live in Canada
    • Have access to a device with an internet connection
    What does the study involve?
    • Use the website for 8 weeks as you desire
    • Complete brief online questionnaires prior to and after using the website
    • Partake in a 30-minute telephone interview to tell us about your experience with using the website
    If you are interested in joining the study or need more information please contact the University of Calgary Project Coordinator, Michelle Smekal at msmekal@ucalgary.ca
     
  • Exploring Patients Knowledge of Precision Medicine & Biobanking
    Are you at least 18 years old? Have you been diagnosed with chronic kidney disease? 

    Researchers at the University of Calgary are exploring patients’ knowledge, perceptions and experiences of precision medicine and biobanking. The findings of this research may help to enhance patient engagement and awareness of precision medicine and biobanking research

    Researchers are looking for patients with chronic kidney disease who are willing to be interviewed about these topics. The interviews will be conducted either by phone or by Skype/Zoom/Google Hangouts and will take approximately 30-45 minutes. 

    In appreciation of participant’s time, a $25 gift card will be provided. Please note that your views will be confidential and no personally identifiable information will be associated with responses.

    If you are willing to participate in this study, please contact:
    Mohammad Haque
    Masters Student at University of Calgary 
    Email: mohammad.haque@ucalgary.ca
    Phone: 403-835-7225
  • Seeking Patients with Primary Membranous Nephropathy (PMN)
    The Canadian Agency for Drugs and Technologies in Health (CADTH) is starting a Health Technology Assessment project for rituximab for primary membranous nephropathy. The objective of this project is to review evidence on the use of rituximab to determine its place in therapy and its cost-effectiveness compared to the current standard of care, which involves cyclophosphamide and calcineurin inhibitors. 
     
    As part of this project, they would like to learn from one or two individuals with primary membranous nephropathy (PMN), to better understand the challenges of the disease and hear their first-hand experiences with rituximab. Participants will take part in a confidential discussion via telephone. They will pay an honorarium to the individuals involved.  
     
    The ideal person(s) would: 
    • Have PMN;
    • Have personal experience with taking rituximab as a treatment for PMN; 
    • Be comfortable talking about their experiences via telephone with CADTH.
    Anyone who is interested should contact julie.boucher@cadth.ca
  • Impact of the COVID-19 pandemic on immunosuppressed graft recipients and their relatives

    The CHUM Research Centre, in collaboration with the Canadian Donation and Transplantation Research Program (CDTRP), are currently recruiting transplant recipients and their family members interested in contributing, as a volunteer research participant, to a study aimed at understanding the Impact of the COVID-19 pandemic on immunosuppressed graft recipients and their relatives. 

    More specifically, this project aims to capture the modification of lifestyle habits, stress, anxiety levels and coping strategies of immunosuppressed graft recipients, their families and their relatives in the specific context of the containment associated with COVID-19 (objective 1). They also wish to study the impact of pet ownership on the stress experienced by this population and the benefits that pets can bring to organ recipients and their families (objective 2). 

    Please note that reaching out or participating to the Information Session does not oblige you to join as a research participant in the project.  

    https://cdtrp.ca/en/seeking-for-transplant-recipients-and-their-family-members-for-a-study-on-the-impact-of-covid-19/

    Contact: stephanie.lariviere-beaudoin.chum@ssss.gouv.qc.ca 

    The research team:  
    Mélanie Dieudé (Ph.D.), Isabelle Doré (Ph.D.), Sylvain Bédard (Patient), Co-Investigators and Stéphanie Larivière, Project manager 

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  • Seeking Kidney Transplant Recipients Across Canada
    Are you a kidney recipient residing in Canada? Your personal experience is of great interest to us!

    There aren’t enough studies that focus on kidney transplant recipients’ experience from their own point of view. This study aims to help better understand kidney recipients’ needs across all contexts of donation (living donation, deceased donation, and donation via Canada’s Kidney Paired Donation program). 

    Participating involves one Skype interview. The interview is also a moment where you will be free to share any concerns related to the current COVID-19 pandemic as well, should you wish to.

     If you are interested in sharing your experience or would like more information, contact:

    Sophia Bourkas
    Doctoral student at University of Montreal
    sophia.bourkas@umontreal.ca

    *Note that reaching out for more info does not in any way oblige you to participate!  
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  • Feedback sought for the development of a wearable dialysis machine
    Qidni Labs, a start-up company from Kitchener, Ontario, is developing a wearable dialysis machine. They have created a questionnaire to better understand the needs and desires of dialysis patients as they move forward in developing and actively improving their wearable device. Qidni Labs would greatly appreciate your time in giving them your input through this survey. Click the link to go to the survey:  https://tinyurl.com/y4op5p6c

    Your feedback will help them make the change you want to see in the future of kidney and dialysis care. You can learn more about them on their website www.qidni.com.
  • TESTING Study Seeking Patients with IgA Nephropathy
    IgA nephropathy is one of the most common causes of kidney disease, especially in younger adults. The mainstay of therapy involves using blood pressure medications to lower both blood pressure and decrease proteinuria. In those wherein proteinuria cannot be lowered to less than a gram, progression to end stage kidney disease occurs over a number of years. There is information to suggest that corticosteroids (medications that suppress the immune system) may be effective at preventing kidney failure in patients with IgA nephropathy. The TESTING Study is an international study being conducted to clearly understand what benefits and risks are associated with corticosteroids in IgA nephropathy, using a corticosteroid called methylprednisolone.

    Over the next year we are looking for 50 patients over the age of 18 with IgA nephropathy to participate in this study at 6 hospitals across Canada. If you are interested in learning more about the study, please contact a research coordinator at one of the hospitals below:

    St. Paul’s Hospital/Vancouver General Hospital (Vancouver, BC): Zainab Sheriff zsheriff@providencehealth.bc.ca or 604-682-2344 x64744

    University of Calgary, Foothills Medical Center (Calgary, Alberta): Sheila Li li2@ucalgary.ca or 403-210-7431

    University of Alberta Hospital (Edmonton, Alberta): Nancy Ruholl nruholl@ualberta.ca or 780-492-3887

    Sunnybrook Health Sciences Centre (Toronto, Ontario): Tatjana Sukovic tatjana.sukovic@sunnybrook.ca or 416-480-6100 x 3247

    London Health Sciences Centre (London, Ontario): Kerri Gallo kerri.gallo@lhsc.on.ca or 519-685-8500 x52212

    Hôpital Maisonneuve Rosemont (Montréal, Quebec): Martine Comeau mcomeau1.hmr@ssss.gouv.qc.ca or 514-252-3400 x4647
  • Join the international SONG-PKD Delphi Panel!
    Are you a patient, caregiver or health professional? Join the international Standardised Outcomes in Nephrology Initiative – Polycystic Kidney Disease (SONG-PKD) Delphi panel and have your say on what outcomes should be included in research in autosomal dominant PKD.

    In Round 1, you will be asked to rate the importance of 41 outcomes. This will be followed by a second round, in which you will see a summary of the group results. Learn more.