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Virtual Peer Support for Neuromuscular Disease

N/A
Waitlist Available
Research Sponsored by The Hospital for Sick Children
Eligibility Criteria Checklist
Specific guidelines that determine who can or cannot participate in a clinical trial
Must have
Timeline
Screening 3 weeks
Treatment Varies
Follow Up 24 week
Awards & highlights

Summary

This trial aims to help family caregivers of individuals with neuromuscular diseases by providing a peer support program. The program connects them with others who have similar experiences to offer emotional and informational support. This helps reduce stress and improve the caregivers' quality of life.

Who is the study for?
This trial is for family caregivers of individuals with neuromuscular disease (NMD) who live in Canada. Participants must be able to speak and read English and have access to the internet and a computer or tablet.
What is being tested?
The study is testing a Virtual Peer Support Program designed to educate, empower, and support family caregivers of individuals with NMD, aiming to improve their quality of life, increase self-efficacy, and reduce stress.
What are the potential side effects?
Since this intervention involves virtual peer support rather than medication or medical procedures, there are no direct physical side effects. However, participants may experience emotional responses related to sharing experiences.

Timeline

Screening ~ 3 weeks
Treatment ~ Varies
Follow Up ~baseline
This trial's timeline: 3 weeks for screening, Varies for treatment, and baseline for reporting.

Treatment Details

Study Objectives

Study objectives can provide a clearer picture of what you can expect from a treatment.
Primary study objectives
Family Caregiver (FC) mastery measured using the Pearlin Mastery Scale (PMS)
Family Caregiver (FC) mastery measured using the Pearlin Mastery Scale (PMS) at 24 weeks
Family Caregiver (FC) mastery measured using the Pearlin Mastery Scale (PMS) at12 weeks
Secondary study objectives
Caregiver Competency - measured using the Caregiving Competence Scale
Family Caregiver Burden and Stress - measured using the Zarit Burden Interview
Family Caregiver Depression and Anxiety: measured using the Depression and Anxiety Stress Scale
+1 more

Trial Design

2Treatment groups
Experimental Treatment
Active Control
Group I: InterventionExperimental Treatment1 Intervention
After informed consent, we will assign participants in a 1:1 ratio to the intervention or control group using Randomize.net. Participants randomized to intervention group will get access to the Virtual Peer Support Program.
Group II: ControlActive Control1 Intervention
Control group: Those randomized to the waitlist control will be given access to the peer support intervention on completion of the first 12-week program. A waitlist control group is an ethical alternative to no-treatment control groups when studying psychological and behavioral interventions 21. will have access to informational resources via the aTouchAway™ App and will also receive the intervention at the end of the trial.

Research Highlights

Information in this section is not a recommendation. We encourage patients to speak with their healthcare team when evaluating any treatment decision.
Mechanism Of Action
Side Effect Profile
Prior Approvals
Other Research
Emotional and informational support are critical non-pharmacologic treatments for neuromuscular disease patients. Emotional support reduces stress and improves mental health by fostering a sense of community and understanding among patients and caregivers. Informational support empowers them with knowledge about the disease, treatment options, and coping strategies, leading to better disease management and improved quality of life. These interventions address the psychological and social aspects of living with neuromuscular diseases, which significantly impact overall well-being.
Energy expenditure, body composition and dietary habits in progressive supranuclear palsy.Active Videogaming Interventions in Adults with Neuromuscular Conditions: A Scoping Review."The impact of European Neuromuscular Centre (ENMC) workshops on the neuromuscular field; 25 years on …".

Find a Location

Who is running the clinical trial?

The Hospital for Sick ChildrenLead Sponsor
704 Previous Clinical Trials
6,956,777 Total Patients Enrolled

Media Library

The Virtual Peer Support Program Clinical Trial Eligibility Overview. Trial Name: NCT05070624 — N/A
Neuromuscular Disease Research Study Groups: Control, Intervention
Neuromuscular Disease Clinical Trial 2023: The Virtual Peer Support Program Highlights & Side Effects. Trial Name: NCT05070624 — N/A
The Virtual Peer Support Program 2023 Treatment Timeline for Medical Study. Trial Name: NCT05070624 — N/A
~33 spots leftby Oct 2025