Case study: Ideas and collaboration for research in multiple sclerosis
One of the ways the Network hopes to achieve its aim is to encourage and facilitate the MS community to work together to develop ideas for studies.
An example of engagement across the local MS community leading to research taking place is the work exploring the breadth of impact of Fampridine.
Fampridine is a treatment that has been approved for use by NHS Wales and NHS Scotland for the improvement of walking in adults with MS who have an EDSS between 4 and 7. It is not currently available on the NHS in England or Northern Ireland but in the South West, people with MS have been campaigning to try and change that.
People with MS receiving care in Plymouth have been able to use Fampridine through a scheme which gave initial free use of the treatment prior to purchasing on a self-funded basis. As a result, a number of individuals experienced the benefits of Fampridine, which go beyond improvement of walking.
The Plymouth Multiple Sclerosis and Health Measurement group, led by Professor Jeremy Hobart, was keen to research the impact of Fampridine to see if this generated evidence to support its MS community in the creation of a case for change. The group instigated an initial service evaluation, which identified consistent benefits across multiple symptom domains. This pilot data was then used to successfully seek funding for a full research study to capture the range and impact of clinical benefits of Fampridine for people with MS.
Working in conjunction with Swansea Bay University Health Board, as a centre able to prescribe the drug via the NHS, the study has interviewed people with MS prior to, and after, commencing Fampridine. The study assesses the impact of MS on each individual prior to their treatment across all symptom domains, then assesses the symptoms that have benefited from the use of Fampridine. This helps determine the overall and specific benefits to the individual of taking Fampridine and its potential cost effectiveness. The results will be shared early in 2023.
Changing the Game: Evaluating the Real World and Cost-Effectiveness of Fampridine in Multiple Sclerosis has been funded by Biogen, Inc. The sponsor is the University of Plymouth, and the study is supported by the NIHR Clinical Research Network South West Peninsula.
For more on the South West MS Research Network, read our news article.