People with MS to benefit from new regional approach to research
A group of clinicians and researchers is leading a ground-breaking initiative to make the South West a go-to region for multiple sclerosis (MS) research, and increase opportunities for those with the disease to trial new treatments.
The South West MS Research Network is part of the wider South West MS Network, which was established to address challenges and realise opportunities in care identified by specialist consultants across Devon and Cornwall.
During an inaugural meeting of more than 70 stakeholders in late 2019, the MS Network identified areas where the community could collaborate to have most benefit for people with the disease. Six working groups were created, seeking to make opportunities available more consistently across the region and increase the efficiency of processes for diagnosis, treatment, monitoring and data collection.
The MS Research Network, led by Dr Agne Straukiene, Consultant Neurologist at Torbay and South Devon NHS Foundation Trust, evolved from the research working group. It aims to widen access to MS studies by promoting them more consistently across the region, through the creation of new shared infrastructure and innovative ways of working.
Supported by the National Institute for Health and Care Research (NIHR) Clinical Research Network South West Peninsula (CRN SWP), an MS research-focused website has been developed. The site provides resources of interest to the whole MS community: people with MS, active and potential MS researchers, drug companies and other organisations that fund research, and anyone interested in getting involved in MS research.
Visitors to the site are able to find out about current MS studies running locally, as well as access the results of studies the South West MS community has contributed to. They can also find a link to the NIHR’s Be Part of Research service for information on other health and social care research taking place in England, Northern Ireland, Scotland and Wales.
In addition, the site provides a forum for stakeholders, both people with MS and researchers, to suggest and develop research questions. The hope is this will drive an increase in the number of studies coming out of the South West and crucially, these studies will reflect the real challenges faced by people with MS (for an example of how the local MS community has influenced research, read this case study). To support this, the CRN SWP has granted the MS Network £10,000 for its patient and public involvement and engagement (PPIE) work, which is part-funding a role in the MS Network.
Looking to the future, the MS Research Network is working on the development of a new model for MS research delivery, which might see clinical leadership and support of studies shared between sites across Devon and Cornwall, for example, and ensure as many aspects of clinical studies as possible can be delivered at a patient’s local site.
By working regionally, the Network aims to make the South West more attractive for commercial research sponsors and others, boosting its ability to attract and retain clinical and academic research projects and providing more opportunities for people with MS to take part in research, no matter where they live in the region.
Dr Straukiene said: “I am delighted to lead and present this new South West MS Research Network project. I encourage people with MS to be active in research. It helps your condition to be monitored more closely, so any changes can be detected earlier. You will also have access to expert medical care. Staff will keep you updated on your progress and how the study is doing.
“Overall, research improves services and treatments not just for you but also for future generations. You may gain access to treatments that are not yet readily available to the general public, and it helps develop new tests for diagnosis, treatments and processes that could eventually help your children, or even your grandchildren.”