We have strong links with disorder-focused national charities such as the Migraine Trust, Epilepsy Action, and The Multiple Sclerosis Society and Multiple Sclerosis Trust. In addition we work with the Neurological Alliance, an umbrella group for neurological charities, to ensure even rarer conditions can be represented in our research portfolio. As an example, the National Lead has attended Migraine Trust patient update days, speaking about the disorder, explaining how the CRN helps studies in this area and fielding questions about how to get involved in research from participants. As a result the number of commercial studies now on portfolio, in part because the charity is supporting participation, has quadrupled in the last year.
We also work with stakeholders including the MS Clinical Trials Network Steering Group and the UK Epilepsy Research Network, and patient support organisations such as Age UK, the Guillain Barré Syndrome Support Group UK and the MS Society to promote the successful delivery of research studies in the NHS that will address patients needs.