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Test-Retest Reliability of Remote Assessments in Patients With Myotonic Dystrophy Type 1.

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Remote assessments for myotonic dystrophy type 1 (DM1) show high reliability and adequate measurement sensitivity. These findings support remote research, improving participation and reducing patient burden.

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Area of Science:

  • Neurology
  • Clinical Trials
  • Biomedical Engineering

Background:

  • Remote assessments were previously shown to be feasible in myotonic dystrophy type 1 (DM1) patients.
  • This study aimed to evaluate the reliability and agreement of these remote assessments.

Purpose of the Study:

  • To assess the test-retest reliability and agreement of remote assessments in DM1.
  • To evaluate the interrater reliability of video-recorded functional assessments in DM1.

Main Methods:

  • Participants with DM1 completed two remote study visits within 3 months.
  • A range of quantitative assessments (strength, functional, respiratory) and patient-reported outcomes were collected remotely.
  • Intraclass correlation coefficients (ICCs) and Bland-Altman plots were used to assess reliability and agreement.

Main Results:

  • Test-retest reliability was excellent for handgrip, FVC, 10MWRT, TUG, and 9HPT, with adequate measurement sensitivity.
  • Interrater reliability was excellent for 9HPT, vHOT, 10MWRT, and TUG.
  • Quantitative measures showed moderate to strong correlations with patient-reported outcomes.

Conclusions:

  • Remote assessments in DM1 are feasible, safe, and demonstrate high reliability and adequate measurement sensitivity.
  • These validated remote methods support broader participation in research and reduce patient burden.
  • Remote assessments can be effectively utilized for clinical research in DM1.