Survey on Dialysis Research Priorities
Seeking Your Input Into Future Dialysis Research
As a person on dialysis or as a person providing care to someone on dialysis, you experience kidney failure treatment firsthand; it is important that you have a say into the type of research that is done to improve the lives of people on dialysis.
The team behind the project “Determining the research priorities of Canadian dialysis patients, caregivers and clinicians” is made up of dialysis patients, researchers and clinicians. Their goal is to determine the research priorities of people receiving dialysis treatment and the priorities of those who help care for them, such as family, friends, doctors, and nurses.
This project is done with the support of the CANN-Net (www.cann-net.ca), The Kidney Foundation of Canada (www.kidney.ca) and the James Lind Alliance (JLA) (www.lindalliance.org), an independent, non-profit organization from the United Kingdom that has pioneered this approach to determining patients’ research priorities in the UK.
The survey was closed on January 15, 2013.The research questions that have been submitted will be organized into topic areas. The project's Steering Committee will identify the top 30 research questions. In the late spring of 2013, about 25-30 people on dialysis, people involved in their care and clinicians will spend a day together to identify the Top Ten research questions.
The list of research priorities will be posted on The Kidney Foundation web site and will be shared with others such as the Canadian Institutes of Health Research, as well as research organizations in other countries.
The Steering Committee guiding this project includes:
- Michael Gladish (Yukon), Claire Large (Alberta), Brenda Toth (Saskatchewan) and Howard Silverman (Quebec), who are either on dialysis, close to needing dialysis or have had a transplant
- Annette Cyr, a former caregiver of someone on dialysis from Nova Scotia
- Brenda Hemmelgarn and Braden Manns, nephrologists and researchers from the University of Calgary
- Sally Crowe, from the James Lind Alliance, Oxford, United Kingdom
- Wim Wolfs, National Director of Research at The Kidney Foundation of Canada
- Andreas Laupacis, a physician and researcher from St. Michael’s Hospital in Toronto (Chair)
- Erin Lillie, a research associate from St. Michael’s Hospital in Toronto