UK Myasthenia Database (UKMyDb)

The UK Myasthenia Database (UKMyDb) is a UK-wide data collecting collaboration between the clinical teams looking after patients with Myasthenia Gravis (MG), Lambert-Eaton Myasthenic Syndrome (LEMS) and Congenital Myasthenic Syndromes (CMS).  It will store information about the diagnosis, assessment and management of people with MG, LEMS and CMS living in the UK. The database will make it possible to give researchers controlled access to anonymised data from a large number of people. The creation of this database was funded by Myaware and it is sponsored by the University of Oxford. 

The purpose of the database is to have accurate data on the number of people with myasthenia in the UK in order to improve care. This in turn will help us identify patterns in myasthenia in different populations in order to improve diagnosis and treatment. 

Recruitment is ongoing across the UK to capture a representative population of this rare disease, which will enable comprehensive longitudinal clinical research including epidemiology, MG subgroups and treatment responses. It will also inform future drug development and clinical trials. 

This is a national project with 3 years funding and the expectation of continued funding on a rolling basis. We plan for the UKMyDb to continue indefinitely, giving future researchers access to the data we accumulate. 

For more information regarding the database, please email Francesca Ferguson, our Research Database Coordinator.

Information for patients

Please see the Participant Information Sheet for more information on joining the database.

If you have any queries on how your data will be used, please email Francesca Ferguson, the UK Myasthenia Database Database Coordinator.