What you should know

Have you just received a diagnosis of Alzheimer's disease or dementia? Are you already on medication for a major neurocognitive disorder? You can help clinical research to make progress in the fight against these diseases.

There is currently no treatment to significantly slow down the evolution of Alzheimer's disease. However, several medications approved by Health Canada are able to alleviate some cognitive symptoms such as memory loss or language problems.
But much remains to be done to better understand the disease (its causes, its treatment, its evolution), or even prevent or delay its onset, or slow its progression. These advances in research won't be possible without the involvement of patients in clinical trials.

In order to help you take this important decision and make an informed choice, the Federation of Quebec Alzheimer Societies published a new brochure, aiming at giving the information about the various options available, the regulation that governs clinical research and the development of a drug as well as a non-exhaustive list of questions to ask, if you decide to get involved.

There are potential risks and benefits to participating in any kind of research. It is important that you understand both before participating in a research study. This checklist 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.

Your involvement in clinical research is completely voluntary and you will always be able to opt out of a trial or study, if you choose to do so, without prior notice.

This brochure was designed with the help and advice of Prof. Serge Gauthier, a neurologist at McGill University and Dr. Alain Robillard, neurologist at Hôpital Maisonneuve-Rosemont. Two focus groups were able to validate and adapt the content: the first group was composed of healthcare professionals, while the second one included people with lived experience.

The Federation of Quebec Alzheimer Societies wishes to acknowledge the support of Eli Lilly Canada and Merck Canada, for their contribution. The opinions expressed are those of the authors and do not reflect the viewpoint of the partners.