The registry of participants is a database project that groups patients diagnosed with Parkinson’s disease throughout Quebec. This registry aims to facilitate contact between ongoing research projects and patients who wish to contribute to advancing knowledge about Parkinson’s disease.
The types of projects are varied, as the network’s main objective is to collect diverse information (neuropsychological, neuroimaging, sleep or genetic). The proposed tests will differ depending on the project you wish to participate in. Your participation may include, for example, answers to questionnaires on lifestyle habits, different puzzle-like tasks, or a visit to an MRI machine.
When you are approached about a project, you may agree or decline 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 should tell the person contacting you that you are not interested in this particular project but that you wish to remain on the patient registry to be contacted for future studies.
You may decline to participate in a research project at any time. There is no obligation to continue. If you wish, you may also request removal from the registry at any time.
Being part of the patient registry means that you agree to be contacted about ongoing Parkinson’s disease studies that match your profile.
Information relevant to clinical follow-up will be communicated to your neurologist.
You can visit the Contact Us section and ask us your question! One of the QPN coordinators will answer you as soon as possible.