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

Université du Québec à Chicoutimi

Status: Active, not recruiting

Conditions: Myotonic Dystrophy Type 1 (DM1)

Treatments: Other: Remote activity program

Study type: Interventional

Funder types: Other

Identifiers

NCT05072288

2022-791

Details and patient eligibility

About

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.

Enrollment: 40 estimated patients

Sex: All

Ages: 18 to 60 years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• DM1 diagnosis must be confirmed by genetic analysis (juvenile, adults or late-onset phenotypes);
• Aged between 18 and 60 years old;
• Be able to do exercise;
• Subjects must be able to give their consent freely and voluntarily.

Exclusion criteria

• Patients who already train (>3 times per week or >150min/week);
• Don't speak french or english;
• Are not able to do exercise (even in sitting position);

Trial design

Primary purpose: Prevention

Allocation: N/A

Interventional model: Single Group Assignment

Masking: None (Open label)

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40 participants in 1 patient group

Remote activity program

Experimental group

Description:

Activity program based on objective evaluation. Possibility of 35 different programs primarily targeting impairments (lower limb, upper limb or balanced)

Treatment:

Other: Remote activity program