In the year of its 10th Anniversary, the UK MS Register has reached a new milestone. By linking with the Register, 5,000 people with MS are not only providing data directly to the MS Register online, but have also agreed to have their NHS medical records connected to their online responses.
Richard Nicholas, Clinical Lead for the Project commented:
“Having both clinical and patient-reported longitudinal data from 5000 people across the UK, allows researchers to potentially identify factors and associations that would otherwise be difficult or impossible to determine. This group of people is also available to ask new research questions to and the potential is limitless.”
The data provides a real-world narrative of their disease, medications, symptoms, comorbidities and lifestyles. The data is anonymised, codified, and linked with the NHS data and forms the foundation for a research resource that has immense value for people with MS, Researchers into MS, epidemiologists and has significant impact on research into public health.
The UK MS Register is a research database and one of the Centres of Excellence operated by a team in Population Data Science, Swansea University Medical School and funded by the MS Society. Data is routinely collected from people with MS and from their doctors and nurses both online and through their specialist. Its one of the largest databases globally with real-world data in MS. Most patient registers hold either clinical or patient reported data and the UK MS Register is unique in that it links both.
Patients with MS are approached in one of the 43 NHS partner sites that the MS Register works with and asked if they are interested in giving their consent to have their medical records linked with the MS Register. They are also encouraged to sign up using their email to the MS Register website. Once on the website, they are asked to return every six months to complete a series of questionnaires. The data collected from both sources is anonymised, linked using a unique code and then made available securely to approved researchers.
Rod Middleton, Principal Investigator of the MS Register said
“This is a hugely significant milestone for the UK MS Register, it shows the commitment and dedication of all of our participants and from the staff at our 43 clinical sites. The value of the data donated by everyone has been demonstrated in the increasing quality and volumes of the publications from this data – making a huge, worldwide impact on MS ResearchWe welcome MS researchers to apply to work with us”
Whether there is a research question that could be answered by MS Register participants, with anonymised clinical data – or both, all enquiries are welcome. The applications go through the Scientific Steering Committee and will be looked at in terms of content, potential participant burden, impact, and relevance to people with MS, MS Register capacity and planned outcomes. Please see these pages for more information https://ukmsregister.org/Research/WorkingWithUs
Maggie, a woman with MS, who is part of the participant group called Brainstormers who help guide the Register from a patient perspective, commented on her experience with the Register.
“Having MS can be quite isolating. Everyone’s experiences are different. There are so many combinations of symptoms and differing rates of progression, you can feel your own situation is unique. Coming from a family of scientists I have an innate respect for and interest in the research being done on MS. Seeing the information I can provide to the U.K. MS Register helping to add to the body of knowledge on MS is very rewarding.”