Therapeutic Education for MSA Patients & Their Caregivers

Status Recruiting

Clinical Trial 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.

Clinical Trial Description

The announcement of MSA diagnosis may provoke a shock in patients and their relatives. Educational programs in neurodegenerative diseases, such as Parkinson's 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 Design

Related Conditions & MeSH terms

Clinical Trial Details

NCT number	NCT05819957
Study type	Interventional
Source	University Hospital, Toulouse
Contact	Margherita FABBRI, MD
Phone	0561772535
Email	fabbri.m@chu-toulouse.fr
Status	Recruiting
Phase	N/A
Start date	June 7, 2023
Completion date	June 2026

View Details

See also
Status	Clinical Trial	Phase
Completed	`NCT03593512` - Deep Brain Stimulation for Autonomic and Gait Symptoms in Multiple System Atrophy	N/A
Recruiting	`NCT03648905` - Clinical Laboratory Evaluation of Chronic Autonomic Failure
Active, not recruiting	`NCT05699460` - Pre-Gene Therapy Study in Parkinson's Disease and Multiple System Atrophy
Recruiting	`NCT02897063` - Effects of Midodrine and Droxidopa on Splanchnic Capacitance in Autonomic Failure	Phase 1
Not yet recruiting	`NCT00758849` - Fipamezole in Neurogenic Orthostatic Hypotension	Phase 2
Completed	`NCT01155492` - Increased Gut Permeability to Lipopolysaccharides (LPS) in Parkinson's Disease	N/A
Recruiting	`NCT04431713` - Exenatide Once-weekly as a Treatment for Multiple System Atrophy	Phase 2
Completed	`NCT04184063` - Study of NBMI Treatment in Patients With Atypical Parkinsons (PSP or MSA)	Phase 2
Recruiting	`NCT05121012` - Synaptic Loss in Multiple System Atrophy
Terminated	`NCT03589976` - A Futility Trial of Sirolimus in Multiple System Atrophy	Phase 2
Recruiting	`NCT04706234` - Systematic Assessment of Laryngopharyngeal Function in Patients With MSA, PD, and 4repeat Tauopathies
Completed	`NCT00368199` - Transcranial Duplex Scanning and Single Photon Emission Computer Tomography (SPECT) in Parkinsonian Syndromes	N/A
Recruiting	`NCT04472130` - Neurodegenerative Diseases Registry
Recruiting	`NCT04876326` - Potential Use of Autologous and Allogeneic Mesenchymal Stem Cells in Patients With Multiple System Atrophy	N/A
Recruiting	`NCT04680065` - GDNF Gene Therapy for Multiple System Atrophy	Phase 1
Completed	`NCT03753763` - Safinamide for Multiple System Atrophy (MSA)	Phase 2
Recruiting	`NCT04250493` - Insulin Resistance in Multiple System Atrophy	N/A
Recruiting	`NCT06072105` - Medical Decision Making in Multiple System Atrophy	N/A
Terminated	`NCT02149901` - Water and Sudafed in Autonomic Failure	Early Phase 1
Terminated	`NCT00997672` - Lithium in Multiple System Atrophy	Phase 2

Clinical trials are conducted in a series of steps, called phases - each phase is designed to answer a separate research question.

Phase 1: Researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.
Phase 2: The drug or treatment is given to a larger group of people to see if it is effective and to further evaluate its safety.
Phase 3: The drug or treatment is given to large groups of people to confirm its effectiveness, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug or treatment to be used safely.
Phase 4: Studies are done after the drug or treatment has been marketed to gather information on the drug's effect in various populations and any side effects associated with long-term use.

Therapeutic Education for MSA Patients and Their Caregivers — ETP@MS

Clinical Trial Summary

Clinical Trial Description

Study Design

Related Conditions & MeSH terms