We are delighted to announce that the MS Society have agreed to continue their support for the UK MS Register. The current arrangement, due to expire in July 2019, has been renewed for a further 3 years which will see the Register through its 10th anniversary year in 2021 and on to 2022.
Based at Swansea University, the project has been run in partnership with the MS Society since our beginnings. This collaboration has been instrumental to our success; from our creation to a world leading medical registry at the forefront of MS research.
Recognising the contribution of the Register to MS Research, Susan Kohlhaas, Director of Research at the Society has written an article for the Association of Medical Research Charities (AMRC). Therein she comments “we continue to be incredibly excited about the potential the Register holds in transforming our understanding of MS …data science is an area that we as a country need to build capacity in… Big data will revolutionise our understanding and treatment of diseases.” You can read the full article on the AMRC website here.
The Register began as a pilot study in 2011; the first medical registry to link clinical data to self-reported outcomes, and has since grown to be one of the leading medical registries of its kind. We now have 5 members of permanent, dedicated staff, with additional support from Swansea University’s Data Science department. We have over 17,000 online participants and partner with 46 NHS sites who help us facilitate the clinical data linkage.
If you are new to either the clinical or the online part of the Register, or if even you’ve been with us a while, here’s an informative video we produced a little while ago that explains what we’re all about.
Over the course of the next 3 years our ambition is to grow the Register; more participants = more data = more research into MS. We also want the Register to be useful to everyone including the clinicians that we partner with. Our goal is to launch a clinical portal, alongside the existing participant portal, so that your MS Team can see what life with MS is like for you outside the clinic which will assist you with your appointments.
