Evidence map›Paper›PMID 42015819›Full record

ArticleEuropean journal of neurology2026

Characteristics of Patients with Myasthenia Gravis in the French Rare Disease Registry.

Jean-Philippe Camdessanche, Andoni Echaniz-Laguna, Guilhem Solé, Cécile Blein, Mariana Ciumas, Claude Messiaen, Anne-Sophie Jannot, Shahram Attarian

Abstract read
In one paragraph

Article in European journal of neurology, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing 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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

8 authors.

Jean-Philippe CamdessancheDepartment of Neurology, Neuromuscular Disease Reference Centre, Hôpital Nord, University Hospital of Saint-Étienne, Euro-NMD, Saint-Étienne, France.ORCID https://orcid.org/0000-0002-5282-6707
Andoni Echaniz-LagunaDepartment of Neurology, APHP, CHU de Bicêtre, INSERM U1195, Paris-Saclay University, Le Kremlin-Bicêtre, France.ORCID https://orcid.org/0000-0003-1012-9783
Guilhem SoléNeuromuscular Reference Center AOC, Neurology and Neuromuscular Diseases Department, Pellegrin Hospital, Bordeaux University Hospitals, Bordeaux, France.ORCID https://orcid.org/0000-0001-9599-6573
Cécile BleinArgenx, Ghent, Belgium.
Mariana CiumasArgenx, Ghent, Belgium.
Claude MessiaenBNMDR, Paris, France.
Anne-Sophie JannotBNMDR, Paris, France.ORCID https://orcid.org/0000-0002-8001-8539
Shahram AttarianReference Centre for Neuromuscular Disease and ALS, Timone University Hospital, Aix-Marseille University, CHU Timone, Filnemus, Euro-NMD, Marseille, France.ORCID https://orcid.org/0000-0002-7211-4694

Funding

ArgenxFrench Ministry of Health
6 · The paper itself

Abstract

backgroundThe French National Rare Diseases Registry (BNDMR) was established in 2007 to ensure access to optimal care standards for all patients with rare diseases in dedicated reference centres. The objective of this retrospective cohort study was to describe patients with myasthenia gravis (MG) in the BNDMR.

methodsAll patients aged ≥ 18 years in the BNDMR with a confirmed diagnosis of MG visiting a reference centre at least once between 2007 and 2021 (inclusive) were included. Diagnosis was defined through ORPHA:589 or ORPHA:391490 disease codes. Patients were followed for ≥ 12 months until 31 December 2022 (or until death). Data were collected on demographics and disease history. Mortality was estimated using Kaplan-Meier survival analysis. Healthcare resource utilisation at the reference centre was documented.

resultsOverall, 3963 patients were analysed. Mean follow-up duration was 6.1 ± 3.8 years. The median interval between diagnosis and inclusion was 3.8 months [IQR: 1.5-7.5] and the median age at symptom onset was 52.0 [IQR: 34.0-69.0] years. Survival probability was 82.7% at 10 years, and higher in women than men (p < 0.001; logrank test). The mean interval between visits was 4.1 months. The mean number of overnight or day hospitalisations per patient was 2.6 ± 3.4 and the mean number of physician consultations per patient per year was 1.7 ± 1.1.

conclusionThis national registry study provides reference data for patients in France with a confirmed diagnosis of MG. However, all patients with MG are still not managed in dedicated reference centres.

Indexed as

Myasthenia GravisRare DiseasesRegistriesAdultAgedFemaleFranceHumansMaleMiddle AgedRetrospective Studiesepidemiologyhealthcare resource utilisationmortalitymyasthenia gravispatient registry

Identifiers

PMID42015819
PMCPMC13100483

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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.