A Registry Based Randomized-Controlled Trial of an Upper Limb Exergaming Intervention for Children and Adolescents With Spinal Muscular Atrophy

NCT ID: NCT06396325

Last Updated: 2025-07-08

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Clinical Phase

NA

Total Enrollment

22 participants

Study Classification

INTERVENTIONAL

Study Start Date

2024-11-01

Study Completion Date

2027-12-31

Brief Summary

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This is a multisite randomized controlled registry-based trial to evaluate the efficacy of an 8-week home-based exergaming intervention as compared to usual care on occupational satisfaction of children and youth (8-18 years old age) with spinal muscular atrophy (SMA).

Detailed Description

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This multisite randomized controlled registry-based trial will evaluate the efficacy of a home-based exergaming intervention, as compared to usual care, on occupational satisfaction of children and youth (aged 8-18 years old) with SMA. Participants in the intervention arm will play the exergame, Tales from the Magic Keep™ on the Azure Kinect platform, 3 times per week, for at least 20 minutes, over 8 weeks (total 8 hours), and continue to access their regular physical activities and rehabilitation services. Those in the usual care arm will continue to access their regular physical activities and rehabilitation services. Occupational satisfaction will be assessed using the Canadian Occupational Performance Measure (COPM) at 8 weeks.

Conditions

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Spinal Muscular Atrophy

Study Design

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Allocation Method

RANDOMIZED

Intervention Model

PARALLEL

Primary Study Purpose

SUPPORTIVE_CARE

Blinding Strategy

SINGLE

Outcome Assessors

Study Groups

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Exergaming Intervention for 8 Weeks

Extension Phase: Participants randomized ot the intervention arm will play Tales from the Magic Keep at home for the 8 week open-label extension phase

Group Type EXPERIMENTAL

Tales from the Magic Keep™

Intervention Type OTHER

Exergame targeting upper limb and trunk movement designed for use on the Microsoft Azure Kinect Dose: At least 3 times a week for 20 minutes over 8 weeks (8 hours total) Continue with regularly accessed physical activities and rehabilitation services

Usual Care for 8 weeks.

Extension Phase: Participants randomized to waitlist usual care will play Tales from the Magic Keep at home for the 8 week open-label extension phase

Group Type ACTIVE_COMPARATOR

Usual Care

Intervention Type OTHER

Continue with regularly accessed physical activities and rehabilitation services

Interventions

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Tales from the Magic Keep™

Exergame targeting upper limb and trunk movement designed for use on the Microsoft Azure Kinect Dose: At least 3 times a week for 20 minutes over 8 weeks (8 hours total) Continue with regularly accessed physical activities and rehabilitation services

Intervention Type OTHER

Usual Care

Continue with regularly accessed physical activities and rehabilitation services

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* Confirmed genetic diagnosis of 5q SMA
* Age at screening: Aged 8-18 years old
* Participant is able to stay seated independently without support for at least 10 seconds
* Participants has a score of at least 2 points in entry item A of the RULM (i.e., "Can raise 1 or 2 hands to the mouth but cannot raise a 200 g weight in it to the mouth")
* Treated with disease-modifying therapy
* Signed ICF

Exclusion Criteria

* Inability to comply with study procedures according to the site investigator, prior to randomization
* Severe scoliosis or contractures that would interfere with gameplay or with successful completion of functional assessments, as confirmed by the clinical evaluator
* Planned orthopedic surgery 6 months prior to or throughout intervention and follow-up period (16 weeks post randomization)
* Inability to read in English or French
Minimum Eligible Age

8 Years

Maximum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Maryam Oskoui, MD, MSc, FRCPC, FAAN

OTHER

Sponsor Role lead

Responsible Party

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Maryam Oskoui, MD, MSc, FRCPC, FAAN

Full Professor, Department of Pediatrics and Neurology & Neurosurgery

Responsibility Role SPONSOR_INVESTIGATOR

Principal Investigators

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Maryam Oskoui

Role: PRINCIPAL_INVESTIGATOR

McGill University

Danielle Levac

Role: PRINCIPAL_INVESTIGATOR

Université de Montréal

Locations

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Alberta Children's Hospital

Calgary, Alberta, Canada

Site Status RECRUITING

BC Children's Hospital

Vancouver, British Columbia, Canada

Site Status RECRUITING

IWK Health Services

Halifax, Nova Scotia, Canada

Site Status RECRUITING

Hospital for SickKids

Toronto, Ontario, Canada

Site Status RECRUITING

Centre de readaptation Marie-Enfant

Montreal, Quebec, Canada

Site Status RECRUITING

Countries

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Canada

Central Contacts

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Mbaye Ndiaye

Role: CONTACT

5149341934 ext. 37299

Facility Contacts

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Julie Dao

Role: primary

403-955-7211 ext. 7132

Alex Salvarinov

Role: primary

604 875 2345 ext. 7132

Sara Drisdelle

Role: primary

902-789-1599

Ana Stosic

Role: primary

416-813-7654 ext. 309965

Evemie Dube

Role: primary

514 374-1710 ext. 8601

Other Identifiers

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MP-37-2022-7289

Identifier Type: -

Identifier Source: org_study_id

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