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118 An update on the status of the UK myasthenia database (UKMyDb)

jnnp · 2025-11-26 · canonical JSON source

13 visible annotations · policy: published · automated confidence ≥ 75.00%

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The UK Myasthenia Database (UKMyDB) is a retrospective and prospective patient registry. It collects longitudinal data on all patients with myasthenia gravis (MG), Lambert-Eaton myasthenic syndrome (LEMS) and congenital myasthenic syndrome (CMS) in the United Kingdom who are under NHS hospital care. Data collected includes patient demographics, diagnosis and clinical data such as comorbidities, symptoms/signs, outcome scores, investigations and treatments. The database began collecting data in June 2023, and since then 15 sites across the UK have joined and are at various stages of patient consent and data entry, with over 700 patients included so far. Data entry is divided into tier 1, 2 and 3, with demographics and diagnosis present in all and clinical data on newly diagnosed and historic patients in tier 2 and 3 respectively. Anonymised data is available free of charge to UK researchers with an interest in myasthenia subject to application and scientific panel review. The registry will remain active indefinitely, and patient recruitment is ongoing. Any NHS trusts that treat patients with MG, LEMS or CMS, including those under the care of neurologists, ophthalmologists and paediatricians are encouraged to make use of, and contribute to this valuable source of data for myasthenia research.mohammad.ashraghi@ndcn.ox.ac.uk