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.

Current opportunities


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:

www.cntrp.ca/survey


We thank you for your participation. Your responses are essential to foster a meaningful partnership and collaboration with the CNTRP.



Health, Coping and Quality of Life for People with Chronic Kidney Disease and Their Family Members

Are you currently on hemodialysis or peritoneal dialysis? Have you received a kidney transplant? Are you a family member of someone on hemodialysis/peritoneal dialysis or living with a kidney transplant?

If you answered “yes” to one of these questions, would you be willing to tell us about your quality of life? We are interested in having you participate in a study being conducted by faculty members and a postdoctoral fellow from the University of Alberta, Faculty of Nursing.

The purpose of this national study is:

  • to explore how symptoms affect quality of life for people living with chronic kidney disease (CKD), transplants, and family members of those with CKD/transplants; and
  • to explore how approaches to coping affect the impact of symptoms, and quality of life for people with CKD/transplants and their families.

You will be asked to complete a survey online. It will take you approximately 30 minutes of your time. If you complete the full survey, you will be entered to win an iPad mini! You will have a 1 in 1000 chance to win. Findings of this study will be made available through the Kidney Foundation of Canada website.

If you are interested, please visit www.kidneysurvey.ca

 



Clinical Trial Studying New Non-surgical Vascular Access Method for Hemodialysis

The Novel Endovascular Access Trial (NEAT) is evaluating the safety and efficacy of the FLEX endoAVF System from TVA Medical, a device that creates an arteriovenous fistula (AVF) in a percutaneous procedure, without general anesthesia or surgery. In the procedure, two thin, flexible magnetic catheters are inserted in an artery and vein in the arm. A small burst of radiofrequency energy is used to connect the artery and vein to create the fistula, and the catheters are removed. The procedure is designed to enable patients to use their AVF for hemodialysis within one to two months.

Five hospitals in Canada are enrolling up to 70 patients in total who will be followed for 12 months in the NEAT clinical trial. The centers include St. Paul’s Hospital in Vancouver; Montreal University Health Centre (CHUM) in Montreal; Toronto General Hospital in Toronto; Lakeridge Health in Oshawa, Ontario; and Victoria Hospital in London, Ontario. NEAT study participants must be willing to travel to one of the trial sites on a monthly basis for one year for hemodialysis and follow-up appointments.

Patients with end-stage (stage IV or V) renal disease interested to enroll in this trial should read this Patient FAQ and talk to their nephrologist before contacting the participating hospital in their region.


 

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