A Remote Physical Activity Program in the Population Suffering from Type 1 Myotonic Dystrophy

Condition(s) studied

Investigational drug(s) / intervention(s)

Remote activity program: Participant will have to do exercise at home everyday (15min/day)

Study summary

The COVID-19 pandemic exacerbates health problems by reducing access to adapted and advanced physical rehabilitation for several people who need rehabilitation services, including the population with myotonic dystrophy type 1 (DM1). The PACE tool, an innovative web tool integrating pragmatic physical activity programs, seems to be an interesting and innovative intervention to counter physical deficiencies of people with DM1, which are unfortunately accentuated by the pandemic, while reducing the risk of COVID-19 exposure. Objectives: 1) Evaluate the feasibility, usability and acceptability of the PACE tool in the DM1 population; 2) Evaluate the effects of the intervention on their physical and cognitive health; and 3) Estimate the cost-effectiveness ratio of this intervention. Method: Sixty people (experimental group = 40 and control group = 20) will participate in this randomized intervention study. Participants in the experimental group will be assigned to one of the 35 physical activity programs adapted to their condition of the PACE tool. The program must be performed on a daily basis for a period of 12 weeks. Physical and cognitive health will be assessed before and after the remote intervention via ZOOM, for all participants.

Eligibility

Primary outcome measure(s)

• Change in Functional capacity from baseline to week 12 — Week 12
  Short physical performance battery Functional reach test
• Change in the Level of physical activity from baseline to week 12 — Week 12
  Rapid Assessment of physical Activity \& International Physical Activity Questionnaires
• Feasability/acceptability of the program and Satisfaction — Week 12
  Number of sessions completed/planned Likert System Usability Scale.

Trial sites (2)

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