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?

Current opportunities

 


Patient Input Survey – Lokelma (sodium zirconium cyclosilicate)


The Kidney Foundation of Canada is seeking information from people living with Chronic Kidney Disease and their caregivers regarding their experience with treatments for hyperkalemia (high potassium), including Lokelma (sodium zirconium cyclosilicate). The Kidney Foundation of Canada is jointly preparing a patient input submission to the Common Drug Review (CDR) with Diabetes Canada for this medication; responses to this survey will inform this submission and any provincial requests for patient input on Lokelma.

The CDR evaluates drugs based on clinical, economic and patient evidence, and makes recommendations on which drugs should be included in federal, provincial and territorial public drug plans (except in Quebec).

PRIVACY INFORMATION: By completing this survey, you are allowing The Kidney Foundation of Canada to review and summarize your feedback in order to prepare a patient input submission to the CDR. The submission will be accessible to the general public online. Any identifying information that you provide will be kept confidential and will not be published or printed.

Please respond by end of day on 20 May, 2019 to be included in the patient input submission.
Complete the survey: https://ca.surveygizmo.com/s3/50048035/patient-input-lokelma

If you have any questions about the survey or privacy considerations, please contact the Kidney Foundation of Canada at 1-800-361-7494 or advocacy@kidney.ca 

TESTING Study Seeking Patients with IgA Nephropathy


IgA nephropathy is one of most common causes of kidney disease, especially in younger adults. The mainstay of therapy involves using blood pressure medications to lower both blood pressure and decrease proteinuria. In those wherein proteinuria cannot be lowered to less than a gram, progression to end stage kidney disease occurs over a number of years. There is information to suggest that corticosteroids (medications that suppress the immune system) may be effective at preventing kidney failure in patients with IgA nephropathy. The TESTING Study is an international study being conducted to clearly understand what benefits and risks are associated with corticosteroids in IgA nephropathy, using a corticosteroid called methylprednisolone.

Over the next year researchers are looking for 50 patients over the age of 18 with IgA nephropathy to participate in this study at 6 hospitals across Canada. If you are interested in learning more about the study, please contact a research coordinator at one of the hospitals below:

Safety, Acceptance, Fairness, and Equality (SAFE Project):
Acceptable Risk and Donor Selection


The SAFE project is a study about attitudes towards blood donation funded by the Canadian Blood Services and carried out by Dr. Blaine Ditto at McGill University. The researchers are interested in gaining insight on how people would react to possible changes in policy that might loosen restrictions on receiving blood from men-who-have-sex-with-men.

Giving your opinion by completing the questionnaire linked below would be very useful in giving the researchers an idea of the different aspects that influence attitudes.

Click here to complete the questionnaire

Join the international SONG-PKD Delphi Panel!


Are you a patient, caregiver or health professional? Join the international Standardised Outcomes in Nephrology Initiative – Polycystic Kidney Disease (SONG-PKD) Delphi panel and have your say on what outcomes should be included in research in autosomal dominant PKD.

In Round 1, you will be asked to rate the importance of 41 outcomes. This will be followed by a second round, in which you will see a summary of the group results. Learn more.

What Do You Think About Exercise During Hemodialysis?

Are you at least 18 years old and do you live in Ontario? Are you currently on hemodialysis? If so, The Ottawa Hospital Research Institute wants to know what you think about exercise during hemodialysis.

The Ottawa Hospital Research Institute is planning an exercise program for people on hemodialysis who are cleared to exercise by their kidney doctor. It wants to hear from you about what you think about this idea so that it can plan its program with your point of view in mind.

If you, or someone you know, is currently on hemodialysis and can spare a few minutes for a short chat (45 minutes) by phone or in person, The Ottawa Hospital Research Institute would be delighted to hear your views – whether or not you are interested in exercising during dialysis!

In appreciation for your time, The Ottawa Hospital Research Institute can offer you a $20 gift card.

Please note that your views will be confidential and that taking part (or not) will not affect your care in any way.

To find out more about this study, please contact Gisell Castillo by email gicastillo@ohri.ca or by phone 613-737-8899 ext. 71578.

Quebec Branch - 2300 René Lévesque Blvd. West, Montreal, QC H3H 2R5 - Tel.: (514) 938-4515 / 1-800-565-4515 within Quebec
Charitable Registration Number: 107567398RR0001