A Home-based Rehabilitation in ARSACS

Last updated: May 23, 2023
Sponsor: Université de Sherbrooke
Overall Status: Active - Recruiting

Phase

N/A

Condition

Autism

Learning Disorders

Sjögren-larsson Syndrome

Treatment

Rehabilitation

Clinical Study ID

NCT05768750
2021-047
  • Ages 18-50
  • All Genders

Study Summary

48 participants (24 women and 24 men) with autosomal recessive spastic ataxia of Charlevoix-Saguenay (ARSACS) will participate in 2 phases : control phase (12-week usual care) and intervention phase (12-week home-based rehabilitation program). The participants will be evaluated at baseline, week 12 (end of control phase) and week 24 (end of intervention phase) to quantify the effects of an individualized home-based rehabilitation program. Participants will also participate on a focus group at the end of the program to evaluate the acceptability of the program and the perceived changes.

Eligibility Criteria

Inclusion

Inclusion Criteria:

  • ARSACS diagnosis must be confirmed by genetic analysis;
  • Women and men, aged between 18 and 50 years old;
  • Be able to perform the sit-to-stand transfer;
  • Consent of the neurologist must be given to participate in this study;
  • Must reside in the Saguenay-Lac-St-Jean region;
  • Subjects must be able to give their consent freely and voluntarily.

Exclusion

Exclusion Criteria:

  • Patients who already meet physical activity (PA) recommendations (150 min of moderateto high intensity PA/week) or already participate in a rehabilitation program areexcluded;
  • Remain in a care facility;
  • Do not speak English or French;
  • Have another diagnosis causing physical limitations;
  • Are pregnant.

Study Design

Total Participants: 48
Treatment Group(s): 1
Primary Treatment: Rehabilitation
Phase:
Study Start date:
December 01, 2022
Estimated Completion Date:
December 01, 2024

Study Description

Co-creation phase:

Preceding the intervention, a co-creation phase involving healthcare professionals (3), patient-partners (2), and ARSACS researchers (3) will be conducted to develop the exercises for the rehabilitation program and the evaluation scale to determine the level of difficulty of each exercise assigned to participants.

Intervention phase:

Random sampling stratified by gender and level of indoor mobility (unassisted walking, assisted walking, wheelchair) from the Neuromuscular Clinic's registry of 48 participants (24 women and 24 men) will be conducted.

  • Control phase: All participants will be asked to maintain their usual activities for 12 weeks.

  • Intervention phase: All participants recruited to the project will complete the home-based rehabilitation program assigned to them for 12 weeks, unsupervised, 20 minutes 3 times a week. Follow-up calls by a physiotherapist will be conducted at weeks 2, 4, 6, 8, 10 and 12.

Connect with a study center

  • Groupe de recherche interdisciplinaire sur les maladies neuromusculaires

    Saguenay, Quebec G7X 7X2
    Canada

    Active - Recruiting

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