Characteristics of Patients with Myasthenia Gravis in the French Rare Disease Registry.
WHY IT MATTERS
This registry data provides real-world evidence about myasthenia gravis outcomes and patient characteristics in France, which can help identify gaps in care and inform treatment guidelines for MG patients across Europe.
Researchers in France studied a group of patients with myasthenia gravis (a rare disease where muscles become weak and tired easily) who were treated at special centers between 2007 and 2021. They collected information about these patients' backgrounds, how their disease developed, and how long they lived. This study helps doctors understand more about this disease and how to care for patients better.
Characteristics of Patients with Myasthenia Gravis in the French Rare Disease Registry. Abstract: 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. 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 Authors: Camdessanche et al. Journal: European journal of neurology MeSH: Humans, Myasthenia Gravis, Registries, Male, Female, France, Middle Aged, Aged, Adult, Retrospective Studies