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Lead investigator

Collaborators & Co-Investigators

• Cynthia Gagnon, PhD
• Carolina Bottari, PhD
• Samar Muslemani (PhDc)

Research Sites & Affiliations

• University of Montreal, Montreal, Quebec

Budget: $98,697.85

Disorders: Myotonic Dystrophy

Research Areas: Amplify Research & Accelerate Knowledge ,   Advance Treatment and Care

Abstract: 

Myotonic dystrophy type 1 (DM1) is a rare health condition that affects muscles and other body systems. It is more common in the province of Quebec. This condition can make muscles weaker over time, and it can be though for people with DM1 to do daily activities, like cooking or managing money. When discussing DM1, muscles are usually the main focus but there are also “invisible” problems, like forgetfulness and not feeling motivated, also known as cognitive problems. There is limited research on how these cognitive problems affect the lives of people with DM1, their families, and healthcare providers. This project aims to understand how cognitive problems impact daily life by using different research approaches like observing how people with DM1 do everyday tasks, completing interviews with participants, their caregivers and healthcare providers. Through these research approaches, the results of this study will identify the most important cognitive problems and how they impact certain activities. The results of this study has the potential to improve services and guide future treatments for cognitive problems among people diagnosed with DM1.

Impact: