In clinical research, disease registries and databases are key tools in improving health outcomes. Within these registries and databases is information relating to disease demographics, patterns, comparison of responses to treatments, and identification of unmet needs in patient care. Having a large collection of this type of data allows clinicians to make decisions and design treatment plans based on previous knowledge of what has been reported to work.

Currently in the UK, there is no national registry of this type for myasthenic disorders. There are a few locally managed databases, but at the moment there is a lack of capacity for combining these services into one national database.
This is what this project, led by Dr Mohammad Ashraghi and supervised by Professor Isabel Leite (both Oxford-based), aims to do for myasthenia. The database is being designed to be user-friendly, web-based, and be able to cope with real-time data entry validation. It will be used by a large number of UK centres/hospitals and aims to include the entirety of the UK myasthenic population.

It is also hoped that with the implementation of this service that more stratified treatments for each different myasthenic disorder (including Lambert-Eaton myasthenic syndrome (LEMS), and congenital myasthenic syndrome (CMS)), can be developed.
With ethical approval, the data available in this database will address an unmet need in the treatment of myasthenia and the way research is approached and designed.

To read more about the variety of research taking place in Oxford for myasthenia, visit the research page at the University of Oxford website.

Myaware research