UK MS Register
Research type
Research Database
IRAS ID
298698
Contact name
Rodden Middleton
Contact email
Research summary
UK MS Register
REC name
South West - Central Bristol Research Ethics Committee
REC reference
21/SW/0085
Date of REC Opinion
5 Aug 2021
REC opinion
Favourable Opinion
Data collection arrangements
The United Kingdom Multiple Sclerosis Register is a ground-breaking study designed to increase our understanding of living with MS in the UK.
The Register holds demographic data (which is anonymised before it is available to researchers), disease history (such as MS type, and dates of onset and diagnosis), and information on health that is related to the disease (such as disability scores, symptoms, and medication).
We collect data from two sources:
* Directly from people with MS via the Internet
* From NHS specialist treatment centres where informed consent is given
Both sources of data are extremely valuable for MS research, and people with MS can participate in either or both datasets. If a participant consents to both, their data can be ‘linked’, which provides an even richer understanding of living with MS.
All data are captured to, and stored using, the highest possible security standards in secure facilities at Swansea University.Research programme
The MS Register is used to research important aspects of living with MS in the UK. Many of our research goals are set in partnership with the Multiple Sclerosis Society and our Scientific Steering Committee. These goals include assessing: the impacts of disease modifying treatments, the epidemiology of the disease, lifestyle factors and the mental health implications of living with MS. Past research projects have also looked at community-focussed questions such as impact of vitamin D supplementation, and costs to individuals for adapting their lifestyle and environment to the disease (rather than hospital/medication costs). To these ends we have worked with people with MS and researchers in MS from established academics to new career researchers. We have engaged with other worldwide registers in federated data sharing initiatives in order to answer pressing questions, including global research projects during the COVID-19 pandemic. Data is only made available to MS researchers who are appropriately qualified and whose research proposal has been approved by the Register’s Scientific Steering Committee, which includes neurologists, other researchers, clinicians, and people with MS.
Research database title
UK MS Register
Establishment organisation
Swansea University Medical School
Establishment organisation address
Data Science Building
Singleton Park
Swansea
SA2 8PP