The UK Multiple Sclerosis (MS) Register, based at Swansea University, has been awarded just over £1m investment from UK charity, the MS Society.
The Register is a ground-breaking medical research study that seeks to collect information from people with the disease about what it’s like to live day-to-day with Multiple Sclerosis. Established in 2011, it was the first UK-wide register of its kind for MS. It’s estimated that over 100,000 people live with the disease in the UK.
MS is one of the most common non-traumatic causes of disability in young adults worldwide. MS is a disease of the central nervous system that has a huge impact on the life of people affected by the disease. People with MS may suffer from physical disabilities, visual disturbances, fatigue, depression or cognitive dysfunction. All of which can influence activities of daily living, work ability, social participation and overall quality of life.
Through gathering large amounts of information from people with MS the Register is able to provide extremely rich, anonymised data for the purposes of medical research, which, it is hoped, can unlock some of the mysteries behind the disease. The Register collects data from three different sources;
- Self-reported outcomes from people with MS via website surveys.
- Clinical records from 47 NHS partner sites.
- Other routinely collected data from health and wellbeing services (e.g. General Practice).
The MS Society has remained the principal funder since its inception in 2011. Recognising the contribution of the Register to MS Research, Susan Kohlhaas, Director of Research at the MS Society said “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.”
The MS Register is part of the wider Population Data Science theme at Swansea University’s School of Medicine. It is a multidisciplinary theme of international standing, conducting Population Health Studies including clinical trials. The Register benefits greatly from this location owing to the world class expertise and collaborative research culture. This has evolved from pioneering work at Swansea in the 1990’s on linking health data sets and defining rigorous standards for medical records.
With this investment from the MS Society the Register hopes to further develop its platform, enhancing its usability and increasing the amount and type of data it collects. The Register continues to build on last year’s website re-launch, to improve its online interface with users and provide feedback to participants.
The Register is now looking to develop a similar interface for clinicians at its 47 partner NHS site locations. This will allow specialists in MS to see how the condition is affecting the day-to-day lives of patients away from the clinic, becoming an important tool for discussion around treatment options and lifestyle.
Other technical advancements are also in the pipeline in terms of the Register’s ability to capture more complex data types like MRI scan data. A ‘Machine Learning’ tool is also planned to extract and organise information directly from clinician’s letters to ease any administration burden for NHS staff.
People with multiple sclerosis (or people acting on behalf of a person with MS) can sign up to the UK MS Register by visiting www.ukmsregister.org .