RecruitingNot ApplicableNCT05819957

Therapeutic Education for Multiple System Atrophy (MSA) Patients and Their Caregivers

Evaluation of a Therapeutic Education Program for Multiple System Atrophy (MSA) Patients : MSA Feasibility

Sponsor

University Hospital, Toulouse

Enrollment

15 participants

Start Date

Jun 7, 2023

Study Type

INTERVENTIONAL

Conditions

Multiple System Atrophy

Summary

Multiple system atrophy (MSA) is a rare neurodegenerative disorder that leads to major disability, forcing patients and caregivers to adapt their environment and lifestyle. Once they receive the diagnosis, patients and caregivers need to understand the symptoms, cope with them, to digest the diagnosis... All these needs are not completely addressed by the current model of care so we created a therapeutic educational program (TEP) program that will last 12 months, involving both patients and caregivers, including a mixed model of in-person visits and continuous on-line activities. Our project aims to target early MSA patients and their caregivers, proposing to test the feasibility (primary objective) of an innovative therapeutic educational program (TEP) for MSA patients.

Eligibility

Min Age: 18 Years

Inclusion Criteria2

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 Criteria6

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

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