Have your say!
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?
Our Kidney Community Contact List is a national and confidential record of people willing to be contacted for their feedback and action on topics of concern to people living with kidney disease. Join our contact list and we will contact you as opportunities arise.
Research Study Examining Caregiver Burden And Innovative Technologies
Researchers from the University of British Columbia are looking for volunteers to participate in a study examining caregiver burden and caregiver technologies.
The GF Strong Rehabilitation Research Centre is currently recruiting for a study aimed at identifying the specific needs of current and past family caregivers in terms of aspects of caregiving and situations that caregivers find most burdensome, and identifying preferences and priorities of caregivers for the development of technological solutions to address these areas.
Participation involves two interviews and a series of self-response questionnaires that can take place either over the phone or in-person at the location of the participant’s choosing. Each interview requires 1 to 2 hours of the participant’s time.
Download this PDF for details and contact information.
Financial Burden Survey
Make your voice heard by participating in a survey about how kidney disease has affected your income and ability to work. Tell us about your out-of-pocket costs because of dialysis.
The survey is open to all adults (ages 18+) across Canada who are currently undergoing in-centre hemodialysis, at-home hemodialysis or peritoneal dialysis treatment.
The goal of this project is to measure the financial burden that patients and their families experience.
The information learned will be used to help The Kidney Foundation of Canada and provincial renal programs to tailor their programs to best suit patient needs. The data will also help The Kidney Foundation strengthen its voice to advocate to government and other funding bodies to provide more financial support for patients, families and dialysis units.
Learn more about the survey and participate here
The ATHENA Study: Mapping the Course of Alport syndrome
Do you have Alport syndrome? Do you know someone who does? Now is your chance – you can do your part to map the course of Alport syndrome if you:
- Are 16 years of age or older, and
- Have been diagnosed with Alport syndrome
Information obtained from this study is critical in designing future clinical trials in patients with Alport syndrome. The ATHENA study is designed to learn more about the changes in the kidneys in patients with Alport syndrome. It is an observational study and does not involve the use of any investigational drugs.
Please note that you are not qualified for this study if you have received a kidney transplant or are currently on dialysis.
To locate your nearest study center, please use this site locator. The study team will discuss whether you are eligible to participate.
At this time, study documents are only available in English. However, if you wish to participate and require French-language materials, please note this in the comment field of your initial response through the form provided.
Priority Setting Survey in Donation and Transplantation
We are interested in learning your views on what topics should be researched in transplantation and donation. Your experiences as a patient, caregiver, researcher and or healthcare professional will help us to identify the top research priorities in transplantation and donation within the Canadian National Transplant Research Program (CNTRP) in order to improve the treatment and the quality of life of transplanted patients and patients waiting for a transplant.
Our research team has created a questionnaire to address this subject. To answer these questions, we ask you to participate in our Online survey that will take approximately 10 minutes to complete. To complete and learn more about the survey, please visit:
We thank you for your participation. Your responses are essential to foster a meaningful partnership and collaboration with the CNTRP.