Myotonic Dystrophy type 1 (DM1) is a multisystem disease that causes muscle weakness and myotonia. As a result upper limb function might become impaired. In this study we will examine patients with DM1 and record their upper limb function. We will will use a battery of patient reported outcomes (PROs) and Outcome measures (OMs) in order to evalute which ones are suitable for use in clinical practise and research studies.
Age range
18 Years
Sex
ALL
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Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
Motor Function Measures (MFM)
Timeframe: 30-45 minutes
Nine Hole Peg Test
Timeframe: 1-3 minutes
Myogrip/Dynamometer
Timeframe: 1-3 minutes
Myopinch
Timeframe: 1-3 minutes
ABILHAND Questionnaire
Timeframe: 5 min
ACTIVLIM Questionnaire
Timeframe: 5 min