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

Focus Group on Medications Used to Treat Anemia of CKD

CTC Research is looking for people who have been living with chronic kidney disease (stage 4 or 5) for many years, who are interested in participating in an online, 90 minute focus group (webcam will be needed) to talk about their opinions on medications used to treat anemia of chronic kidney disease.

The CTC Research team plans to study how policy makers, kidney doctors, pharmacists and patients feel about biosimilars and biologic medications used to treat anemia of chronic kidney disease in a study titled: Preferences of originator versus subsequent entry erythropoiesis-stimulating agents for the treatment of anemia of chronic kidney disease; a discrete choice experiment among policy makers, nephrologists, renal pharmacists and patients.

Principal investigators: Dr Clifford Lo, PharmD, MHA, BCPS; and Nicole Tsao, BSc(Pharm), MSc, PhD (cand.).

Background: Erythropoiesis-stimulating agents (biologic drugs) have been the main ingredient for treating anemia of kidney disease treatment since the 1980s. Today, approximately 80% of dialysis patients require these drugs.  As patent protection expires for these products, biosimilars, or “highly similar copies” of the original biologic drugs, will be sold and used in Canada.  Biosimilars provide an opportunity to reduce health care costs, but there is a small possibility they can differ in safety and how they work. 

Date and time: Thursday, April 6th 2017 at 7:30PM EST / 4:30 PM PST

Honorarium: $100 once the respondent qualifies and completes the group

If you are interested in taking part, please answer this short questionnaire to help us determine your eligibility for this study.

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.

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.


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