Are you a researcher looking to post your study here? Visit our page on finding study participants.
Participate in a current study
The Alzheimer Society Research Portal connects researchers with Canadians looking to participate in studies. This initiative will help to advance Canadian studies on Alzheimer’s disease and other dementias.
To get involved in a specific study, please refer to the contact information found within the studies linked below.
- A telephone interview seeking individuals caring for a person living with dementia who has recently been discharged from hospital to home, as well as healthcare providers and other healthcare professionals who provide care and support to people living with dementia. Recruitment ends June 22, 2022.
- An app-focused study seeking individuals who are providing informal and unpaid care for a person living with dementia, identify as primary caregiver for a person living with dementia, own a smartphone and are not currently using a mobile app created for caregivers of people living with dementia. Recruitment ends June 30, 2022.
- An online survey seeking "Double Duty Caregivers" – Canadian family caregivers who are also healthcare professionals (including healthcare aides and personal care attendants). Recruitment ends June 30, 2022.
- A short, online survey seeking adults over the age of 18. Recruitment ends April 12, 2023.
- A 15-minute online survey seeking caregivers to individuals living with dementia. Recruitment ends February 21, 2024.
- An online and task-focused study seeking adults diagnosed with mild cognitive impairment and/or Alzheimer's disease, or healthy adults, 40 years of age or older, and have a parent diagnosed with Alzheimer's disease. Recruitment ends June 30, 2024.
- A study focusing on learning activities seeking adults either living with a rare or young dementia, caring for a person living with a rare or young onset dementia or work with or have a professional interest in rare or young onset dementia. Recruitment ends December 31, 2024.
- Nova Scotia
- A telephone, paper and online study seeking adults living with dementia and are living in the community; family members, care partners or caregivers of a community-dwelling person living with dementia; Nova Scotia Heath (NSH) healthcare professionals who provide dementia care; and/or a client service staff member of the Alzheimer Society of Nova Scotia. Recruitment ends June 30, 2022.
- A survey and interview seeking adults living with dementia or family caregivers of a person living with dementia, and live in a region that regularly experiences snow or ice during the winter month. Participants may enroll as an individual or can be enrolled as a pair. Recruitment ends June 30, 2022.
- A discussion and questionnaire-based study seeking nursing and retirement home staff such as personal support workers and supervisors, as well as medical professionals such as nurses, physicians and social workers. Recruitment ends July 1, 2022.
- An online study seeking adults aged 60 or over. Individuals who have a diagnosis of dementia or another condition (see the link for the full list) are ineligible to participate in this study. Recruitment ends September 1, 2022.
- An observational, in-home study seeking adults living with a neurodegenerative disease (such as Alzheimer's disease or mild cognitive impairment) OR living with the effects of a stroke OR living independently with no diagnosis of a neurodegenerative disease. Recruitment ends March 10, 2023.
- A virtual interview and on-site test evaluating swallowing ability seeking people living with dementia. Presence of swallowing difficulties is not necessary to participate in this study. Recruitment ends February 22, 2024.
- A computerized task-based experiment seeking adults with mild cognitive impairment associated with possible or probable Alzheimer’s disease, and do not have any other neurological or neuropsychological disease. This study is also seeking adults aged 65 or over who do not have any neurological or neuropsychological disease for the control group. Recruitment ends July 21, 2024.
- A telephone/video interview and questionnaire seeking either adults over the age of 65 and living with dementia or care partners to an individual over the age of 65 who is living with dementia. Recruitment ends July 31, 2022.
- A telephone interview seeking adults living with dementia or are a family carer of a person living with dementia, and reside in southeast Saskatchewan communities and surrounding areas of RaDAR memory clinics (Kipling, Weyburn, Bengough, Radville and Carlyle). Recruitment ends September 12, 2022.
- A 10-week program and virtual interview seeking adults participating in a Minds in Motion program in Saskatchewan (virtual or in-person). Recruitment ends October 2, 2022.
Participate in a pharmaceutical or clinical trial
Pharmaceutical and clinical trials are not included in the Alzheimer Society Research Portal. You can find these studies by visiting ClinicalTrials.gov.
For more information about donating brain tissue for research in Canada, contact the following:
The Maritime Brain Tissue Bank
Sir Charles Tupper Building
Faculty of Medicine, Dalhousie University
Halifax, Nova Scotia B3H 4R2
Phone: Andrew Reid at (902) 494-4130
The Douglas-Bell Canada Brain Bank (residents of Quebec)
Douglas Hospital Research Centre
6875 LaSalle Blvd.
Borough of Verdun
Montreal, Quebec H4H 1R3
Phone: (514) 761-6131 ext. 0 and ask for the “brain bank”
Note: Brain donation to the Douglas-Bell Canada Brain Bank is currently restricted to participants of longitudinal cohort studies such as CIMA-Q (http://www.cima-q.ca/en/home/) and CCNA (https://ccna-ccnv.ca/).
How to make arrangements for brain donation
- Inform the attending physician that you would like an autopsy of the brain to be made and request a consent for autopsy form.
- Complete a consent for autopsy form as follows:
- Indicate that a brain autopsy is being requested,
- Specify in writing that a donation to a brain bank is also being requested,
- Indicate which location you would like the brain donation to be sent to: 1) Maritime Brain Tissue Bank or 2) Douglas-Bell Canada Brain Bank, and
- Ensure that the next of kin signs the consent form.
- The on-call pathologist within the hospital is to be notified that a brain autopsy has been requested.
- Contact the brain bank to inform them that a brain donation is being made following the autopsy.
- Following the autopsy, hospital staff will make arrangements to have half of the brain sent to the requested brain bank as per the instructions stated on the consent for autopsy form.
Other notes to consider
- Not all hospitals conduct brain autopsies, in which case the body may have to be transported to another institution where the procedure can be performed. In such circumstances, the attending pathologist at the receiving hospital must be notified of this request so that the appropriate procedure can be performed.
- Half of the brain tissue will be retained by the hospital to confirm the neuropathological diagnosis. A report of the findings should be made available to the family via the physician who requested the autopsy. A copy should also be sent to the receiving brain bank for their confidential records.
- In some provinces there is also a fee associated with brain autopsy. It is recommended that you consult your physician for these details.
- In cases where the donor passes away at home or within a care residence, costs for autopsy will likely apply.
It is important to mention that a brain autopsy does not interfere with the funeral service. There are generally no visible scars resulting from the procedure and the donor can have an open casket if preferred. A 24-hour delay should be expected.
Why participate in research?
Clinical research uses human volunteers to study the effects of an exposure (for example, a drug or behaviour) on a health outcome (for example, blood pressure, symptom relief or improved quality of life). The knowledge we gain through clinical research helps improve the ways we can prevent, diagnose and treat disease.
Types of clinical studies
There are two main types of clinical studies you might be interested in being involved with:
Clinical trials examine the effects of an experimental intervention, delivered as part of the trial. Interventions can include new drugs, devices or ways to receive healthcare, as well as things like changes in behaviour, such as diet and exercise programs.
People in the trial may be assigned to receive the intervention, or not, to compare health outcomes between the people in each group.
Observational studies involves interviews and/or tests. The key difference with clinical trials is that participants in observational studies are not assigned to receive an experimental intervention as part of the study.
Risks and benefits to participation
There are potential risks and benefits to participating in any kind of research. It's important that you understand both before participating in a research study.
- Download our full brochure on participating in research.
- This checklist of questions to ask is meant to help you make the best decision, for you and your family, about participating in research.
- We suggest that you use this sheet to take notes of the details of each clinical research study that interests you.
- Many of these questions will require a detailed conversation with someone working on the study.
- You can also check out Alzheimer's Disease International's guide to getting involved in clinical trials.
Learn more about participating in research
Some places to learn more about research studies you might become involved with include:
- Health Canada,
- The Consortium of Canadian Centres for Clinical Cognitive Research (C5R),
- Your local hospital or health science centre, and
- Your healthcare providers (e.g., your family physician).
More useful links and resources
Participating in research. Alzheimer Society of Canada, July 2018. This information sheet can help people living with dementia decide if participating in a research study is right for them.
Checklist for participating in research studies: what should I ask? Alzheimer Society of Canada, December 2016. This check sheet can help anyone interested in participating in a research study know what to expect and how to be prepared.
Health Canada's Clinical Trial Database. Health Canada, last updated June 2016. Through this database, the general public can look up specific information about Canadian clinical trials involving human pharmaceutical and biological drugs, including whether a clinical trial has met regulatory requirements.
ClinicalTrials.gov. U.S. National Library of Medicine. A database of privately and publicly funded clinical studies conducted around the world.
The Consortium of Canadian Centres for Clinical Cognitive Research (C5R). This not-for-profit research network has more information on how drugs are approved in Canada, and how to participate in a clinical trial in Canada.