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Lead investigator

Collaborators & Co-Investigators

• Marie-Eve Poitras RN, PhD Université de Sherbrooke, QC | (Co-PI)
• Benjamin Gallais, PhD | Cégep de Jonquière, QC

Budget: $46,706.00

Disorders: All Neuromuscular Disorders

Research Areas: Enhance Care

Abstract: 

Individuals impacted by neuromuscular disorders require specialized care and services which are generally offered outside of the neurological/neuromuscular clinics. Our clinic is one of the largest in Canada with more than 1600 patients under active follow-up using a health management approach and the presence of a team of internationally recognized research (Interdisciplinary Research Group on Diseases neuromuscular (GRIMN). Our clinical experience and previous research have raised questions about how well patients and their families understand research including therapeutic trials and the extent of their consent to participate in certain research initiatives such as international registers.

The objectives of this pilot project are to: 1) Create an interactive waiting room in a university clinic subspecialized in neuromuscular care aimed at informing patients and their families about various topics in research; and 2) To assess the effects of using an interactive waiting room and viewing information products to increasing patient’s knowledge.

Impact: