Symptoms and Outcome Measures for Upper- Limb Function in Myotonic Dystrophy Type 1

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Myotonic Dystrophy 1
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Brief Title

Symptoms and Outcome Measures for Upper- Limb Function in Myotonic Dystrophy Type 1

Official Title

Symptoms and Outcome Measures for Upper- Limb Function in Myotonic Dystrophy Type 1

Brief Summary

      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.

Study Type

Observational

Primary Outcome

Motor Function Measures (MFM)

Secondary Outcome

 Trunk Impairment Scale - modified Norwegian version

Condition

Myotonic Dystrophy 1

Publications

* Includes publications given by the data provider as well as publications identified by National Clinical Trials Identifier (NCT ID) in Medline.

Recruitment Information

Estimated Enrollment

80

Start Date

October 2021

Completion Date

December 2026

Primary Completion Date

October 2023

Eligibility Criteria

        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

Gender

All

Ages

18 Years - N/A

Accepts Healthy Volunteers

No

Contacts

Kristin L Ørstavik, PHD, +47 93630606, [email protected]

Location Countries

Norway

Location Countries

Norway

Administrative Informations

NCT ID

NCT05006924

Organization ID

255164

Responsible Party

Principal Investigator

Study Sponsor

Oslo University Hospital

Collaborators

 University of Oslo

Study Sponsor

Kristin L Ørstavik, PHD, Principal Investigator, Oslo University Hospital

Verification Date

August 2021