Symptoms and Outcome Measures for Upper- Limb Function in Myotonic Dystrophy Type 1 (SOUL-DM1)

University of Oslo (UIO)

Status: Completed

Conditions: Myotonic Dystrophy 1

Study type: Observational

Funder types: Other

Identifiers

NCT05006924

255164

Details and patient eligibility

About

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.

Enrollment: 89 patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• Genetically confirmed Myotonic Dystrophy type 1

Exclusion criteria

• Unable to answer or understand questionnaires due to language barriers or cognitive status
• Unable to perform functional tests