Participate in a Study

Manuel and Suzanna are both kidney transplant recipients and employed at the Foundation.

Current opportunities

• Understanding the experience of CKD patients with anemia in Canada

  In Toronto, Research Strategy Group is currently conducting a qualitative market research study on behalf of a leading industry sponsor to understand the patient experience of people affected by anemia associated with chronic kidney disease (aCKD). 
  
  The research team is looking for individuals 18 or older, living in Canada, diagnosed with aCKD, and actively receiving ESA (erythropoietin stimulating agents such as Eprex^® or Aranesp^®). If you fit this description, you can request participation in the study. All selected participants will receive compensation for their participation. 
  
  The study includes two parts conducted in the following order: (1) a 30-minute self-reflection journal homework; and (2) a 60-minute video conference interview (on Zoom) with open-ended questions to allow participants to share their perspectives, opinions, and views. 
  
  This study will conclude on February 28, 2023. 
  
  This study conforms to requirements to protect your personal information; the study coordinator will provide further details. 
  
  Should you have any questions, please contact: 
  
  Pat Manclark 
  Toll free: 1-866-845-6448 ext 286  
  Local: 416-236-4770 ext 286 
  Email: pat.manclark@logitgroup.com 
   

• Studying the life stories of families of immunocompromised (IC) children during the COVID-19 pandemic

  At the University of Manitoba, researchers are studying the lived experience of families of immunocompromised (IC) children during the COVID-19 pandemic. Their goal is to identify meaningful insights to help such families overcome challenges throughout the current pandemic and during future crises.
  
  If you have an IC child under 18, you are eligible to participate in this study. Participation will involve:

  1. An individual interview with each family member (who is interested)
  2. An individual or family group photograph activity followed by an interview about the photos
  3. Optional: Creation of a short video followed by a discussion of it in another interview

  You can organize each part of this study at your own convenience. You will also receive an honorarium for taking part in the research.
  
  This study is led by Dr. Roberta Woodgate and is ongoing until May 2025. Translators will be available for study participants.

  Should you have any questions, please contact:  
   

  Dr. Roberta Woodgate
  ingauge@umanitoba.ca 
  (204) 480-1051

• Access to medications: Daprodustat
  The Kidney Foundation of Canada is inviting people living with chronic kidney disease, as well as their caregivers, to share their experiences for a medication reimbursement review.  We’d like to know more about your experience with treatments to treat anemia, including daprodustat.
  
  These medication reviews evaluate drugs based on clinical, economic and patient evidence, and make recommendations as to which drugs should be included in federal, provincial and/or territorial public drug plans.  Your responses to this survey will inform our submission to CADTH (Canada’s Drug and Health Technology Agency), INESSS (Institut national d’excellence en santé et en services sociaux) and/or provincial evaluations.
  
  Participation is anonymous and no identifying information will be published or printed.  The survey will take approximately 5-10 minutes to complete.
  
  To participate, please visit https://survey.alchemer-ca.com/s3/50162463/Patient-Input-Survey-daprodustat by November 14th.
   
• NON-DIABETIC HYPERTENSIVE KIDNEY DISEASE
  Adult patients of African/African American ethnic heritage from Canada diagnosed with non-diabetic hypertensive kidney disease are invited to participate in a study. The study aims to understand what living with hypertensive kidney disease is like on a daily basis. Caregivers may choose to participate.
  
  The study will explore information about diagnostic pathways and treatment milestones, treatment options and ongoing management, interactions with healthcare providers and unmet needs you experienced throughout your journey.
  
  Participants will be asked to complete a 60 min web-assisted telephone interview in English arranged according to your availability. Remuneration is being provided.
  
  Please note that this study conforms to all laws that protect your personal information.
  
  Study Deadline: February 10, 2022
  
  For more information:
  Adisa Batueva (she/her) 
  Email: adisa.batueva@atheneum-partners.com
  T: +49 30 679 661 409
• Identifying key research topics about cognition
  Cognition (the ability to remember, learn new things, focus, and/or make everyday life decisions) has been identified as a top research priority for people with chronic kidney disease. The aim of this survey is to find out what specific research questions about cognition are important to people living with kidney disease, their family members, as well as researchers, clinicians, and decision makers. 
  
  You are invited to give your opinion on the top three most important research questions on cognition in people with chronic kidney disease. The questions you identify can be for any stage of chronic kidney disease or modality. 
  
  The survey is available in English, French, Portuguese and Spanish:
  
  English: https://rcsurvey.radyfhs.umanitoba.ca/surveys/?s=DDPFCA3XRE
  Português: https://rcsurvey.radyfhs.umanitoba.ca/surveys/?s=LXTNE8XAC3
  Español: https://rcsurvey.radyfhs.umanitoba.ca/surveys/?s=PXRMYNJRCL
  Français: https://rcsurvey.radyfhs.umanitoba.ca/surveys/?s=LCN33KFPLE
  
  For more information, contact:
  Oksana Harasemiw, Research Coordinator
  oharasemiw@sogh.mb.ca
  1-204-632-3541
  
  The University of Manitoba Health Research Ethics Board # is: HS24827 (H2021:152)
   
• Research Study on Periods and Birth Control Use Among Female Patients with Kidney Disease
  A research study on the periods and birth control use of female patients with kidney disease worldwide is being conducted by the University of Calgary to improve clinical care in the context of gynecologic, reproductive and kidney health. 
  
  If you are a female 18+ years and interested in completing a short survey, we would like to hear from you. Participants will have a chance to win 1 in 10 Amazon gift cards ($50 CAD). Note that responses will be completely confidential and anonymous (unless participants are interested in entering the prize draw or being contacted for a future interview, in which case they must provide their contact information).
  
  This survey is available in English, in French, in Spanish and in Punjabi.
  
  Participate in this study:  https://survey.ucalgary.ca/jfe/form/SV_ctOZesXGXG3fM4m
  
  Should you have any questions, please contact:
  Dr. Sofia Ahmed
  Tel.: 403-220-2550
  Sofia.Ahmed@albertahealthservices.ca
• Study on the life stories of families of children who are immunocompromised during COVID-19
  Are you a family living in Canada with a child under 18 years old who is immunocompromised, or who has an immune system condition? 
  
  The University of Manitoba invites you to take part in a virtual interview as part of a research project called “Making visible the life stories of families of children who are immunocompromised during COVID-19”. Participants will receive a $30 gift card in appreciation of their contribution.
  
  For more information, please contact:      
  Rachelle Sass
  Tel.: (204) 480-1044
  Rachelle.Sass@umanitoba.ca
• Study on Physical Activity and Exercise Practice Patterns of People on Peritoneal Dialysis
  Are you currently on peritoneal dialysis, or were you previously on it? Are you 18 years of age or older? If you responded yes and have access to a device with an Internet connection, the University of Calgary would like to hear from you!
  
  Share your voice by completing a short, anonymous survey to help researchers understand the physical activity and exercise practice patterns of people on peritoneal dialysis.
  
  For more information, please contact: 
  Dr. Jennifer MacRae 
  Tel.: (403) 210-6766
  jennifer.macrae@ahs.ca
• Survey on intake and access to fruits and vegetables
  The University of Manitoba wants to hear from people with lived experience of CKD and their caregivers from Canada; they are invited to complete a short survey about fruit and vegetable intake and home delivery of groceries.
  
  The survey is available online: https://www.surveymonkey.com/r/ZM96DDC 
• Impact of the COVID-19 pandemic on immunosuppressed people and their relatives
  The Canadian Donation and Transplantation Research Program (CDTRP) in collaboration the CHUM Research Center conducted a first data collection during summer 2020 among 137 transplant recipients and their relatives to understand the impact of COVID-19 pandemic on lifestyle behaviours and mental health.
  They are now conducting a follow-up among these participants and recruiting new immunosuppressed participants (transplanted or not) and their relatives to investigate changes and current states in mental health and lifestyle behaviours one year after the start of COVID-19 pandemic.
  
  More specifically, this project aims to capture the modification of lifestyle habits, stress, anxiety levels and coping strategies and vaccination perception of immunosuppressed people and their relatives in the specific context of the confinement associated with COVID-19. We also wish to study the impact of pet ownership on lifestyle behaviours and mental health of this population.
  
  If you wish to join the study, please follow the link below to fill in the Consent Form for the first Online Questionnaire. This follow-up questionnaire should take approximately 15-20 minutes to complete. Once you are done, do not forget to press the arrow to SUBMIT the survey. https://survey.ca1.qualtrics.com/jfe/form/SV_1LaD8RziswKux6u
• VIRTUAL PATIENT ADVOCACY VOLUNTEER OPPORTUNITY
  MEDSKL is a free, open-access medical education platform that is recruiting patient volunteers to share their story with medical students through a live webinar series called "Patient Perspectives". This is an opportunity for individuals in The Kidney Foundation community to teach future physicians about kidney disease from the perspective of their lived experience. The webinar will be 1 hour in length and hosted on Zoom on a weeknight evening of your choice. If you are interested in this opportunity, please sign-up using the online form or contact MEDSKL at www.medskl.com/contact.
• Options and Preferences for Treatments Informing recOmmendatioNs Study in Vasculitis (OPTIONS Vasculitis)
  OPTIONS Vasculitis is being organized by researchers and patients from Canada, Switzerland, the United Kingdom, and the United States. They are trying to understand how patients with ANCA associated vasculitis (sometimes called granulomatosis with polyangiitis [GPA], Wegener’s granulomatosis, or microscopic polyangiitis [MPA]) make decisions about treatments they might be offered.
  
  If you’re a patient with vasculitis or kidney disease that lives in Canada, the United Kingdom, or the United States, please help out by taking 15 minutes to complete a survey regarding patient values and preferences about plasma exchange in ANCA associated vasculitis. 
  
  Take the survey: https://www.surveymonkey.com/r/optionsvasculitis
    
  All responses are anonymous. Your answers will help patients and doctors with shared decision making about plasma exchange in patients with vasculitis and kidney disease as well as inform clinical practice guidelines. Thanks! 
• Participate in a survey about cannabis use and symptoms in patients with kidney disease
  The health benefits of cannabis in patients with kidney disease are unknown. We are studying cannabis for the treatment of symptoms related to kidney disease.
  
  This is a survey designed by patients for patients to: 

  • Collect information about cannabis use for symptom relief in kidney disease.
  • See if there is interest for clinical trials for cannabis in kidney disease.

  Participation is anonymous and all responses are confidential. The survey will take approximately 5-10 minutes to complete.
  
  To participate please visit https://www.surveymonkey.com/r/TCCWJFX
  
  If you have any questions, please contact:
  Dr. David Collister
  Email: David.Collister@phri.ca
• Exploring Patients Knowledge of Precision Medicine & Biobanking
  Are you at least 18 years old? Have you been diagnosed with chronic kidney disease? 
  
  Researchers at the University of Calgary are exploring patients’ knowledge, perceptions and experiences of precision medicine and biobanking. The findings of this research may help to enhance patient engagement and awareness of precision medicine and biobanking research
  
  Researchers are looking for patients with chronic kidney disease who are willing to be interviewed about these topics. The interviews will be conducted either by phone or by Skype/Zoom/Google Hangouts and will take approximately 30-45 minutes. 
  
  In appreciation of participant’s time, a $25 gift card will be provided. Please note that your views will be confidential and no personally identifiable information will be associated with responses.
  
  If you are willing to participate in this study, please contact:
  Mohammad Haque
  Masters Student at University of Calgary 
  Email: mohammad.haque@ucalgary.ca
  Phone: 403-835-7225
• Impact of the COVID-19 pandemic on immunosuppressed graft recipients and their relatives

  The CHUM Research Centre, in collaboration with the Canadian Donation and Transplantation Research Program (CDTRP), are currently recruiting transplant recipients and their family members interested in contributing, as a volunteer research participant, to a study aimed at understanding the Impact of the COVID-19 pandemic on immunosuppressed graft recipients and their relatives. 
  
  More specifically, this project aims to capture the modification of lifestyle habits, stress, anxiety levels and coping strategies of immunosuppressed graft recipients, their families and their relatives in the specific context of the containment associated with COVID-19 (objective 1). They also wish to study the impact of pet ownership on the stress experienced by this population and the benefits that pets can bring to organ recipients and their families (objective 2). 
  
  Please note that reaching out or participating to the Information Session does not oblige you to join as a research participant in the project.  
  
  https://cdtrp.ca/en/seeking-for-transplant-recipients-and-their-family-members-for-a-study-on-the-impact-of-covid-19/
  
  Contact: stephanie.lariviere-beaudoin.chum@ssss.gouv.qc.ca 
  
  The research team:  
  Mélanie Dieudé (Ph.D.), Isabelle Doré (Ph.D.), Sylvain Bédard (Patient), Co-Investigators and Stéphanie Larivière, Project manager 

          
• Feedback sought for the development of a wearable dialysis machine
  Qidni Labs, a start-up company from Kitchener, Ontario, is developing a wearable dialysis machine. They have created a questionnaire to better understand the needs and desires of dialysis patients as they move forward in developing and actively improving their wearable device. Qidni Labs would greatly appreciate your time in giving them your input through this survey. Click the link to go to the survey:  https://tinyurl.com/y4op5p6c
  
  Your feedback will help them make the change you want to see in the future of kidney and dialysis care. You can learn more about them on their website www.qidni.com.
• TESTING Study Seeking Patients with IgA Nephropathy
  IgA nephropathy is one of the 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 we 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:
  
  St. Paul’s Hospital/Vancouver General Hospital (Vancouver, BC): Zainab Sheriff zsheriff@providencehealth.bc.ca or 604-682-2344 x64744
  
  University of Calgary, Foothills Medical Center (Calgary, Alberta): Sheila Li li2@ucalgary.ca or 403-210-7431
  
  University of Alberta Hospital (Edmonton, Alberta): Nancy Ruholl nruholl@ualberta.ca or 780-492-3887
  
  Sunnybrook Health Sciences Centre (Toronto, Ontario): Tatjana Sukovic tatjana.sukovic@sunnybrook.ca or 416-480-6100 x 3247
  
  London Health Sciences Centre (London, Ontario): Kerri Gallo kerri.gallo@lhsc.on.ca or 519-685-8500 x52212
  
  Hôpital Maisonneuve Rosemont (Montréal, Quebec): Martine Comeau mcomeau1.hmr@ssss.gouv.qc.ca or 514-252-3400 x4647