What is a participant registry?
A database project that unifies patients diagnosed with Parkinson’s disease across Quebec. The goal of this registry is to facilitate contact between ongoing research projects and patients who wish to contribute to the advancement of knowledge on Parkinson’s disease.
What type of research projects are offered?
The types of projects are varied, as the main objective of the network is to gather a maximum of diverse information (neuropsychological, neuroimaging, sleep or genetic). According to the project you wish to participate in, the tests proposed will be different. Your participation might include, for example, answers to questionnaires on life habits, or different tasks that resemble brain teasers, or visiting an MRI machine.
Can I choose which project I want to participate in?
When someone contacts you for a project, you can agree or refuse to participate. It is entirely your choice, and your decision will not affect your relationship with your neurologist or the care you receive. If you do not wish to participate, you must simply indicate to the person who contacts you that this particular project does not interest you, but that you wish to remain in the patient registry in order to be contacted for future studies.
Can I decide not to participate even if I have already committed?
You can refuse to participate in a research project at any time. There is no obligation to continue. If you wish, you can also ask to be removed from the registry at any time.
What does my participation involve?
Being part of the patient registry means that you agree to be contacted about ongoing studies on Parkinson’s disease that your profile matches.
Will my neurologist be able to use some of the information in my medical follow-up?
Relevant information for a clinical follow-up will be communicated to your neurologist.