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

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Title: Characteristics of Patients with Myasthenia Gravis in the French Rare Disease Registry.
Authors: Camdessanche, Jean‐Philippe (AUTHOR), Echaniz‐Laguna, Andoni (AUTHOR), Solé, Guilhem (AUTHOR), Blein, Cécile (AUTHOR), Ciumas, Mariana (AUTHOR), Messiaen, Claude (AUTHOR), Jannot, Anne‐Sophie (AUTHOR), Attarian, Shahram (AUTHOR)
Source: European Journal of Neurology. Apr2026, Vol. 33 Issue 4, p1-5. 5p.
Subjects: Myasthenia gravis, Rare diseases, Medical records, Medical care use, Survival analysis (Biometry), Disease progression
Geographic Terms: France
Abstract: Background: The 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. Methods: All 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. Results: Overall, 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. Conclusion: This 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. [ABSTRACT FROM AUTHOR]
Copyright of European Journal of Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
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  Data: Characteristics of Patients with Myasthenia Gravis in the French Rare Disease Registry.
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  Data: &lt;searchLink fieldCode=&quot;AR&quot; term=&quot;%22Camdessanche%2C+Jean‐Philippe%22&quot;&gt;Camdessanche, Jean‐Philippe&lt;/searchLink&gt; (AUTHOR)&lt;br /&gt;&lt;searchLink fieldCode=&quot;AR&quot; term=&quot;%22Echaniz‐Laguna%2C+Andoni%22&quot;&gt;Echaniz‐Laguna, Andoni&lt;/searchLink&gt; (AUTHOR)&lt;br /&gt;&lt;searchLink fieldCode=&quot;AR&quot; term=&quot;%22Sol&#233;%2C+Guilhem%22&quot;&gt;Sol&#233;, Guilhem&lt;/searchLink&gt; (AUTHOR)&lt;br /&gt;&lt;searchLink fieldCode=&quot;AR&quot; term=&quot;%22Blein%2C+C&#233;cile%22&quot;&gt;Blein, C&#233;cile&lt;/searchLink&gt; (AUTHOR)&lt;br /&gt;&lt;searchLink fieldCode=&quot;AR&quot; term=&quot;%22Ciumas%2C+Mariana%22&quot;&gt;Ciumas, Mariana&lt;/searchLink&gt; (AUTHOR)&lt;br /&gt;&lt;searchLink fieldCode=&quot;AR&quot; term=&quot;%22Messiaen%2C+Claude%22&quot;&gt;Messiaen, Claude&lt;/searchLink&gt; (AUTHOR)&lt;br /&gt;&lt;searchLink fieldCode=&quot;AR&quot; term=&quot;%22Jannot%2C+Anne‐Sophie%22&quot;&gt;Jannot, Anne‐Sophie&lt;/searchLink&gt; (AUTHOR)&lt;br /&gt;&lt;searchLink fieldCode=&quot;AR&quot; term=&quot;%22Attarian%2C+Shahram%22&quot;&gt;Attarian, Shahram&lt;/searchLink&gt; (AUTHOR)
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  Data: &lt;searchLink fieldCode=&quot;JN&quot; term=&quot;%22European+Journal+of+Neurology%22&quot;&gt;European Journal of Neurology&lt;/searchLink&gt;. Apr2026, Vol. 33 Issue 4, p1-5. 5p.
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  Data: &lt;searchLink fieldCode=&quot;DE&quot; term=&quot;%22Myasthenia+gravis%22&quot;&gt;Myasthenia gravis&lt;/searchLink&gt;&lt;br /&gt;&lt;searchLink fieldCode=&quot;DE&quot; term=&quot;%22Rare+diseases%22&quot;&gt;Rare diseases&lt;/searchLink&gt;&lt;br /&gt;&lt;searchLink fieldCode=&quot;DE&quot; term=&quot;%22Medical+records%22&quot;&gt;Medical records&lt;/searchLink&gt;&lt;br /&gt;&lt;searchLink fieldCode=&quot;DE&quot; term=&quot;%22Medical+care+use%22&quot;&gt;Medical care use&lt;/searchLink&gt;&lt;br /&gt;&lt;searchLink fieldCode=&quot;DE&quot; term=&quot;%22Survival+analysis+%28Biometry%29%22&quot;&gt;Survival analysis (Biometry)&lt;/searchLink&gt;&lt;br /&gt;&lt;searchLink fieldCode=&quot;DE&quot; term=&quot;%22Disease+progression%22&quot;&gt;Disease progression&lt;/searchLink&gt;
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  Data: &lt;searchLink fieldCode=&quot;DE&quot; term=&quot;%22France%22&quot;&gt;France&lt;/searchLink&gt;
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background: The 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. Methods: All 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. Results: Overall, 3963 patients were analysed. Mean follow‐up duration was 6.1 &#177; 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 &lt; 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 &#177; 3.4 and the mean number of physician consultations per patient per year was 1.7 &#177; 1.1. Conclusion: This 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. [ABSTRACT FROM AUTHOR]
– Name: AbstractSuppliedCopyright
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  Data: &lt;i&gt;Copyright of European Journal of Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder&#39;s express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.&lt;/i&gt; (Copyright applies to all Abstracts.)
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        Value: 10.1111/ene.70604
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              Text: Apr2026
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