SNOWDONIA v1.0
Research type
Research Study
Full title
SNOWDONIA: Study of Neuroinflammatory Outcomes in Wales: Disease biology, Observation and NeuroImAging
IRAS ID
259533
Contact name
Neil P Robertson
Contact email
Sponsor organisation
Cardiff University Research & Innovation Services
Duration of Study in the UK
10 years, 0 months, 0 days
Research summary
The South Wales MS registry is currently the most detailed clinical database of people with multiple sclerosis (MS) and other neuroinflammatory demyelinating diseases in the UK. It includes data from nearly 2000 people, collected over >20 years. It has already helped to explore changes in MS disease frequency, service-use (e.g. appointments with a neurologist or nurse), people’s symptoms, and use of treatments. We have also been able to use the data to evaluate the impact of MS on socioeconomics and quality of life. Biological samples (e.g. blood) obtained from many of the people in the registry has allowed us to investigate biological markers associated with MS. It is vital that we continue to monitor the outcomes of these people with MS and other neuroinflammatory diseases to help us better understand i) prognosis, ii) how effective treatments are, and iii) the optimum healthcare requirements for the population. We aim to continue collecting data and biological samples from people with MS and other neuroinflammatory conditions that are currently enrolled in the registry, as well as include new people presenting with symptoms of neuroinflammatory disease. Due to the longstanding nature of the database, we are in a position to investigate predictors of long-term outcomes in MS. New participants will be recruited through NHS clinics at the University Hospital of Wales. All patients attending these clinics will be eligible to participate, and there will be no change in normal NHS clinical practice. Clinical information, results of tests and investigations, and biological samples (e.g. blood) obtained during routine clinic visits will be recorded in the database. Analysis of this clinical and biological data will allow investigation of predictors of outcome in MS and other neuroinflammatory diseases, and the best choice of therapy for individuals.
REC name
Wales REC 3
REC reference
19/WA/0289
Date of REC Opinion
13 Jan 2020
REC opinion
Further Information Favourable Opinion