The UK MS Register, based at Swansea University, was established in 2011 as the first nationwide register of its kind.
It seeks to gather information from people with MS about what it’s like to live day-to-day with the condition.
This information provides rich, anonymised data for the purposes of medical research, which could unlock some of the mysteries behind the disease.
Data is collected through self-reported outcomes from people with MS via website surveys; plus clinical records from 47 NHS partner sites and other routinely collected data from health and wellbeing services, including GPs.
The MS Society has remained the principal funder since its inception.
Susan Kohlhaas, director of research at the charity, says: “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 new investment will help the register to expand, including by increasing the amount and type of data it is able to collect.
A new interface will also be developed 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.
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