Therapeutic education program for patients with multiple system atrophy and their caregivers
Evaluation of a Therapeutic Education Program for Multiple System Atrophy (MSA) Patients : MSA Feasibility
This study is testing a new educational program for patients with multiple system atrophy and their caregivers to see if it helps them better understand the disease and improve their quality of life.
Quick facts
| Phase | Not applicable |
|---|---|
| Study type | Interventional |
| Enrollment | 15 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | University Hospital, Toulouse Academic / other |
| Locations | 1 site (Toulouse) |
| Trial ID | NCT05819957 on ClinicalTrials.gov |
What this trial studies
This program aims to provide therapeutic education to patients diagnosed with multiple system atrophy (MSA) and their caregivers. It involves a 12-month mixed model of in-person visits and continuous online activities designed to enhance understanding of the disease, coping strategies, and overall management. The primary objective is to test the feasibility of this innovative educational approach, which has been successful in other neurodegenerative conditions. By empowering patients and caregivers with knowledge and skills, the program seeks to improve their quality of life and psychosocial well-being.
Who should consider this trial
Good fit: Ideal candidates include patients diagnosed with MSA within the last year and their caregivers who are actively involved in their care.
Not a fit: Patients with a life expectancy of less than one year or those unable to participate in the educational activities may not benefit from this program.
Why it matters
Potential benefit: If successful, this program could significantly enhance the quality of life for MSA patients and their caregivers by providing essential knowledge and coping strategies.
How similar studies have performed: While educational programs for other neurodegenerative diseases like Parkinson's have shown success, this specific approach for MSA is novel and untested.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Patients who have had a clinically probable diagnosis of MSA within the last 3 years or clinically established within the last year * Presence of a caregiver defined as a spouse, son/daughter or relative who lives with or sees the patient on a regular basis, i.e. at least three times a week. Exclusion Criteria: * Patients and/or caregiver unable to give consent * Patients without access to an internet network or without the material means to access the distance learning modules * Patients with a life expectancy of less than one year * Patients with legal guardians, curators, or legal protection * Patients not affiliated to a social security system * Patients in a period of exclusion from another study
Where this trial is running
Toulouse
- CHU Toulouse — Toulouse, France (Recruiting)
Study contacts
- Principal investigator: Margherita FABBRI, MD — University Hospital, Toulouse
- Study coordinator: Margherita FABBRI, MD
- Email: fabbri.m@chu-toulouse.fr
- Phone: 0561772535
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.