Overview
Overview
We are excited to be asking people on dialysis, their care providers and the clinicians who look after them to share their ideas about the research that is required to meet their needs. This web site provides access to the questionnaire for those who wish to complete it, describes our research protocol (our plan) and the membership of the Steering Committee, and provides an opportunity for you to comment. We will eventually post the results of the study on this site as well.
About
- What’s the study about?
We are asking people on dialysis, their care providers and the clinicians who look after them to share their ideas about the research they think is needed to help improve the management and quality of life of people on, or starting, dialysis in the next year.
- Why is this study important?
People on dialysis and those who care for them “live the disease”, so they should have a say about what the most important research priorities are.
- How will the study be conducted?
We will follow an approach that has been used successfully by the James Lind Alliance in the United Kingdom (http://www.lindalliance.org/). Research priorities will be collected using a survey that will be completed by people on, or starting, dialysis in the next year, care providers and clinicians. The full list of priorities that is identified will be narrowed down to a “top 10” list by a group of people on, or starting, dialysis in the next year, clinicians and researchers. All questions identified, and the final list, will be published on our website and presented to researchers and organizations that fund research.
How to Participate
You can participate by completing a short, anonymous survey, in which you describe your research priorities. In order to be successful, we need as many people as possible to complete the questionnaire. We hope that you will share your ideas with us! If you have any questions, feel free to contact us.
Survey is Now Closed
More Information
- Our protocol, which provides details about the aims, objectives and methods of the project, can be found here.
- A list of all of the research priorities that were identified will be provided on this website when they are available.
- The final list of the top 10 research priorities will be provided on this website when they are available.
Contact Us
If you have any questions or comments about our study, please contact:
Dr. Andreas Laupacis
Li Ka Shing Knowledge Institute of St. Michael’s Hospital,
30 Bond St., Toronto,
Canada. M5B 1W8.
Tel: 416-864-5780
Email:
Results
Results
Top 10 research priorities identified from the project
1. What is the best way to enhance communication between health care professionals and patients and to maximize patient participation in decision-making with regards to the advantages and disadvantages of different forms of dialysis, and access to test results to facilitate self-management?
2. How do different dialysis modalities compare in terms of their impact on quality of life, mortality and patient acceptability, and are there specific patient factors that make one modality better for some patients with kidney failure than others?
3. What are the causes and effective treatment(s) of, and ways to prevent, itching in dialysis patients?
4. What is the best strategy to increase kidney transplantation; including access to transplantation, increasing the efficiency of the recipient workup, and increasing the availability of donor kidneys?
5. What is the psychological and social impact of kidney failure on patients, their family, and other caregivers, and can this be reduced?
6. What are the best ways to promote heart health in dialysis patients, including management of blood pressure?
7. For people with kidney failure, what is the impact of each of the dietary restrictions (sodium, potassium, phosphate) separately, and when taken in combination, on important outcomes including quality of life?
8. What are the best ways to manage symptoms in people on or nearing dialysis including poor energy, nausea, cramping, and restless legs?
9. What are the causes and effective treatment(s) of depression in dialysis patients?
10. What is the best vascular access (among both new and existing types of access) for people on hemodialysis?
About Us
Who We Are
The study is funded by the Canadian Institutes of Health Research and supported by The Kidney Foundation of Canada. It is being led by a steering committee of 4 patients, 1 care provider, 2 nephrologists, 2 researchers, a member from The Kidney Foundation of Canada and a collaborator from the James Lind Alliance.
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Sally Crowe - I have a nursing and public health background. I co-chair the James Lind Alliance, a national coalition that aims to tackle treatment uncertainties in health care. As director of Crowe Associates Ltd, which provides consultancy, training and project management for patient and public involvement in health, Ifacilitate workshops and consultation events in health and social care research in the UK and internationally. Teaching critical appraisal and understanding evidence skills continues to be a passion.
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Annette Cyr - I am a mother of two and have worked in the Insurance Industry for the last 26 years. I am presently employed at Aviva Insurance, and have been involved with my mother’s dialysis for the last five years as her care provider. I have also belonged to the Kidney Patient Advocacy Committee in Halifax for the last three years.
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Michael Gladish - I am retired following an extensive career in the Public Service of Canada as a Management Consultant in Ottawa and as a Senior Project Manager for Public Works and Government Services in Calgary. I was initially diagnosed with renal insufficiency in 2003 and am fortunately not yet on dialysis. I am a widower and live on a country residential property 20 minutes from downtown Whitehorse with my two cats. I enjoy canoeing, fishing and creative endeavours.
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Brenda Hemmelgarn - I am a nephrologist in Calgary, and actively involved in research as the Roy and Vi Baay Chair in Kidney Research. I have always wondered what patients and their caregivers felt were important research questions, and I am extremely excited to be a part of this project. My husband Tim and I have just built a house on an acreage outside of Calgary, so we are back in the country again.
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Claire Large - I originate from Saddle Lake Cree Nation and have a loving family that consists of my husband, our three children, and three grand children. In 1986 I was diagnosed with lupus and suffered renal failure in 2005. I completed my Bachelor of Social Work from the University of Calgary and am currently working in Tsuu T'ina Nation.
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Andreas Laupacis - I am a physician at St. Michael’s Hospital in Toronto, and currently practice palliative care. I have recently become interested in increasing patient involvement in research priority setting, and am very excited about this project. I have been married to Karen for 26 years, have two children at university, a dog at home, and we are in the middle of building a house on a small farm in the Ottawa valley.
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Erin Lillie - I am a research coordinator at St. Michael’s Hospital in Toronto. I completed my Master’s degree in epidemiology at Queen’s University in 2011 and before that, spent some time in Lyon, France where I taught English to high school students (and practiced my French, an ongoing passion)! I also have a psych degree and previously worked at the Hospital for Sick Children in ADHD (attention-deficit/hyperactivity disorder) research.
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Braden Manns - I am a nephrologist and Associate Professor at the University of Calgary. I am the principal investigator of a Canadian kidney disease “knowledge translation” network, CAnadian KidNey KNowledge TraNslation and GEneration NeTwork (CANN-NET), and do research investigating the optimal management of people with chronic disease. I raise cattle and chickens on a farm outside of Calgary, where I live with my family.
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Howard Silverman - As President & CEO of the CAI Global Group, Mr. Silverman has consulted numerous Canadian subsidiaries of foreign multinationals involving investment project attraction and retention strategies, government incentives and financial assistance, government relations and the procurement of world mandates from head office. Mr. Silverman has been on dialysis for over four years, and has experienced home peritoneal dialysis, hospital dialysis and nocturnal home hemodialysis since 2010. Mr. Silverman is married, is a father of 4, and resides in Hemmingford, Quebec.
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Brenda Toth - I have been a dialysis patient since February 2002 and have undergone several types of treatment for chronic renal failure as a result of focal segmental glomerulonephritis. I am currently on nocturnal home hemodialysis but I also use peritoneal dialysis periodically as I travel extensively for both work and pleasure. I am an engineer who works full-time as a research hydrologist for Environment Canada and also hold volunteer positions within the Canadian Water Resources Association.
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Wim Wolfs - I have been with the Kidney Foundation of Canada’s Research Department since 2003 and have been involved in setting up the KRESCENT Program (training program for kidney researchers), CANN-NET (knowledge translation program) as well research priority- setting. I am very pleased to be involved in this project which will give patients a voice in research.
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