Evidence map›Paper›PMID 40765498›Full record

Observational studyMovement disorders clinical practice2025

Development and Feasibility of a Mixed Virtual and in-Presence Therapeutic Education Program for Early Multiple System Atrophy Patients.

Margherita Fabbri, Estelle Harroch, Eva Camgrand, Paulo André Dias Bastos, Wassilios G Meissner, Marie Christine Llorca, Cecile Travere, Marc Kermorgant, Olivier Rascol, Clémence Leung and 7 more

Registry-linked trialAbstract readObservational Study
In one paragraph

Observational study in Movement disorders clinical practice, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT05819957 (Evaluation of a Therapeutic Education Program for Multiple System Atrophy), which is not on this map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT05819957 nacompletednot on this map

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

TypeinterventionalSponsorUniversity Hospital, ToulouseRan2023 to 2025Enrolled15ConditionsMultiple System AtrophyArmsTherapeutic Education Program (TEP)
3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Multiple system atrophy: cure and care.Journal of neural transmission (Vienna, Austria : 1996) · 2026
    Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

17 authors.

Margherita FabbriDepartment of Clinical Pharmacology and Neurosciences, Toulouse Parkinson Expert Centre, Toulouse NeuroToul Center of Excellence in Neurodegeneration (COEN), French NS-Park/F-CRIN Network, University of Toulouse 3, CHU of Toulouse, INSERM, Toulouse, France.ORCID https://orcid.org/0000-0001-7250-592X
Estelle HarrochDepartment of Clinical Pharmacology and Neurosciences, Toulouse Parkinson Expert Centre, Toulouse NeuroToul Center of Excellence in Neurodegeneration (COEN), French NS-Park/F-CRIN Network, University of Toulouse 3, CHU of Toulouse, INSERM, Toulouse, France.
Eva CamgrandDepartment of Clinical Pharmacology and Neurosciences, Toulouse Parkinson Expert Centre, Toulouse NeuroToul Center of Excellence in Neurodegeneration (COEN), French NS-Park/F-CRIN Network, University of Toulouse 3, CHU of Toulouse, INSERM, Toulouse, France.
Paulo André Dias BastosDepartment of Clinical Pharmacology and Neurosciences, Toulouse Parkinson Expert Centre, Toulouse NeuroToul Center of Excellence in Neurodegeneration (COEN), French NS-Park/F-CRIN Network, University of Toulouse 3, CHU of Toulouse, INSERM, Toulouse, France.ORCID https://orcid.org/0000-0002-1195-3611
Wassilios G MeissnerCHU Bordeaux, Service de Neurologie des Maladies Neurodégénératives, CRMR AMS, IMNc, Bordeaux, France.ORCID https://orcid.org/0000-0003-2172-7527
Marie Christine LlorcaAGO Formation, Toulouse, France.
Cecile TravereUTEP, Univ. Hospital Toulouse, Toulouse, France.
Marc KermorgantMSA French Reference Center, Univ. Hospital Toulouse, Toulouse, France.
Olivier RascolDepartment of Clinical Pharmacology and Neurosciences, Toulouse Parkinson Expert Centre, Toulouse NeuroToul Center of Excellence in Neurodegeneration (COEN), French NS-Park/F-CRIN Network, University of Toulouse 3, CHU of Toulouse, INSERM, Toulouse, France.ORCID https://orcid.org/0000-0002-1410-6397
Clémence LeungMSA French Reference Center, Univ. Hospital Toulouse, Toulouse, France.
Aude RoyCHU Bordeaux, Service de Neurologie des Maladies Neurodégénératives, CRMR AMS, IMNc, Bordeaux, France.
Anne Pavy-Le-TraonToulouse NeuroImaging Center, University of Toulouse, Inserm, UPS, Toulouse, France.
Christine MoharaMSA French Reference Center, Univ. Hospital Toulouse, Toulouse, France.
Charlotte Scotto D'ApolloniaDepartment of Clinical Pharmacology and Neurosciences, Toulouse Parkinson Expert Centre, Toulouse NeuroToul Center of Excellence in Neurodegeneration (COEN), French NS-Park/F-CRIN Network, University of Toulouse 3, CHU of Toulouse, INSERM, Toulouse, France.
David BendetowiczCHU Bordeaux, Service de Neurologie des Maladies Neurodégénératives, CRMR AMS, IMNc, Bordeaux, France.
Alexandra Foubert-SamierCHU Bordeaux, Service de Neurologie des Maladies Neurodégénératives, CRMR AMS, IMNc, Bordeaux, France.
Christine Brefel-CourbonDepartment of Clinical Pharmacology and Neurosciences, Toulouse Parkinson Expert Centre, Toulouse NeuroToul Center of Excellence in Neurodegeneration (COEN), French NS-Park/F-CRIN Network, University of Toulouse 3, CHU of Toulouse, INSERM, Toulouse, France.

Funding

Direction Générale de l'offre de SoinsMultiple System Atrophy Coalition MSAC-2022-12-007
6 · The paper itself

Abstract

backgroundMultiple system atrophy (MSA) is a relentlessly progressive neurodegenerative disorder with no cure. While therapeutic education programs (TEPs) benefit many chronic conditions, data in MSA are limited.

objectivesTo assess the feasibility and satisfaction of a mixed in-person/virtual TEP for early-stage MSA patients and caregivers.

methodsA six-module, self-paced TEP was co-developed over 2 years by MSA healthcare professionals, patients, and education experts. A prospective pilot study enrolled recently diagnosed MSA patients (≤12 months) and caregivers. Primary outcomes were recruitment and retention rates. Secondary outcomes included disease progression (UMSARS I-II), health-related quality of life (Hr-QoL), compared to matched controls not enrolled in the TEP and patients' satisfaction.

resultsFifteen patient-caregiver pairs were enrolled. Recruitment and retention rates were 44% and 86%, respectively; 78% of modules were completed (least consulted was disease progression). Disease severity and Hr-QoL worsened over 12 months, with no significant differences versus controls. Overall, 90% of participants were satisfied or very satisfied.

conclusionsOur pilot study shows that a mixed TEP for MSA patients and familial caregivers is feasible and able to engage them over time.

Indexed as

Education, DistanceMultiple System AtrophyPatient Acceptance of Health CarePatient Education as TopicPatient SatisfactionAgedCaregiversCase-Control StudiesDisease ProgressionFeasibility StudiesFemaleHumansMaleMiddle AgedOutcome Assessment, Health CarePilot Projectscaregiverseducational therapymultiple system atrophyquality of life

Identifiers

PMID40765498
PMCPMC12625177

What OpenQuestion holds

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Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.