Your session is about to expire
← Back to Search
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 weeks3 visits
Treatment ~ Varies
Follow Up ~ baseline
Screening ~ 3 weeks
Treatment ~ Varies
Follow Up ~baseline
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 moreTrial 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 …".
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
Eligibility Criteria:
This trial includes the following eligibility criteria:Research Study Groups:
This trial has the following groups:- Group 1: Control
- Group 2: Intervention
Awards:
This trial has 1 awards, including:- No Placebo-Only Group - All patients enrolled in this study will receive some form of active treatment.
Timeline:
This trial has the following timeline:- Screening: It may take up to 3 Weeks to process to see if you qualify in this trial.
- Treatment: The duration you will receive the treatment varies.
- Follow Ups: You may be asked to continue sharing information regarding the trial for 6 Months after you stop receiving the treatment.
Share this study with friends
Copy Link
Messenger