The UK MS Register was launched in 2011 by the Health Informatics Group at Swansea University Medical School and is entirely funded by the MS Society. The fundamental concept is to capture more real world data about living with MS in the United Kingdom.
The Swansea Health Informatics Group is also responsible for the Secure Anonymised Information Linkage (SAIL) databank. This is a world class anonymised linkage system that is utilised by researchers and healthcare providers all over the world.
The MS Register is built upon this well established system making use of many of its technologies. A core component of this infrastructure is the concept of the Secure e-Research Platform (SeRP) this allows us to group secured, anonymised datasets by interest or disease area, but leave the management of this with the Researchers and Clinicians responsible. Data for researchers is always anonymised and the access to this can be federated by the researcher responsible.