Ignite Creation Date:
2024-05-06 @ 6:51 PM
Last Modification Date:
2024-10-26 @ 2:56 PM
Study NCT ID:
NCT05819957
Status:
RECRUITING
Last Update Posted:
2024-07-01
First Post:
2023-04-06
Brief Title:
Therapeutic Education for Multiple System Atrophy MSA Patients and Their Caregivers
Sponsor:
University Hospital Toulouse
Organization:
University Hospital Toulouse
Study Overview
Official Title:
Evaluation of a Therapeutic Education Program for Multiple System Atrophy MSA Patients MSA Feasibility
Status:
RECRUITING
Status Verified Date:
2024-06
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
ETPMS
Brief 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
Detailed Description:
The announcement of MSA diagnosis may provoke a shock in patients and their relatives Educational programs in neurodegenerative diseases such as Parkinsons disease PD offer patients and caregivers structured skills in disease knowledge expertise and management Those programs may result in an improvement of patients quality of life QoL empowering patients and their caregivers to deal with psychosocial challenges Additionally it has been shown that educational programs positively impact the perceived health of PD patients without increasing medical costs There is no educational program for MSA patients This is the reason why we created the first therapeutic educational program TEP for MSA patients and caregivers including a mix model of in person visits and online classes and virtual activities Herein we aim to target early MSA patients time to diagnosis 1 year and their caregivers proposing to test the feasibility of this TEP The program will last 12 months involving both patients and caregivers including a mixed model of in-person visits at baseline and 12 months and continuous on-line activities learning situations questionnaires quizzes videos and interactive exercises
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
False
Is a FDA Regulated Device?:
False
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None
Secondary IDs
| Secondary ID | Type | Domain | Link |
|---|---|---|---|
| 2023-A00340-45 | OTHER | ANSM | None |