Neurological Disorders - Speciality profile
Delivering Neurological Disorders Research in the UK
Neurological Disorders is one of 30 specialties within the National Institute for Health Research (NIHR) Clinical Research Network (CRN) which brings together communities of clinical practice to provide national networks of research expertise. We oversee research dealing with common, disabling long-term disorders such as migraine, epilepsy, multiple sclerosis, neuro-muscular disease, neurological infections such as encephalitis, and developmental disorders of the nervous system. Our studies cover diagnosis, prevention, treatment and care of these conditions.
Our membership is made up of research-interested clinicians and practitioners at both national and local levels. Our job is to ensure that studies of neurological disorders included in our national portfolio receive the right support so they are delivered on-time and to target in the NHS.
All regions in England and Wales and the devolved nations have representation in our group. A high proportion of our membership is comprised of nationally and internationally recognised key opinion leaders who are Principal Investigators for many studies and have also acted as Chief Investigators at national and international levels. We have a dedicated Industry Lead for commercial studies who provides strategic direction as well as an operational link between industry, the NIHR and researchers.
Access to patients
We deliver research across a wide range of health care settings including primary and community care, and acute hospitals, working closely with patient charities to ensure their engagement.
Almost 35,000 participants have been recruited into over 400 commercial and non-commercial research studies over the last two years (2017/18, 2018/19).
• A great example of our commitment to widen access to patients is the MENDS study (looking at the use of melatonin to treat children with neuro-developmental disorders and impaired sleep). Community paediatricians identified children in care or being looked after by their extended family. This required working with local authorities, social services and the children’s families to gain consent but it was a valuable approach to widening access to a very difficult to reach patient population.
• Multiple Sclerosis (MS) is a common, highly disabling problem with a range of therapies and innovations currently being tested. We have targeted MS as one of our three key areas to support given the clinical burden and commercial interest. As an example of our work in this area we contributed to a worldwide multi-centre study aiming to find genetic factors associated with developing the disease, by helping recruit over 2000 participants in Greater Manchester.
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.
Multiple Sclerosis - Secondary Progressive Multi-Arm Randomisation Trial (MS SMART)
The progressive stage of Multiple Sclerosis results not in individual attacks but slow, cumulative and irreversible disability affecting walking, balance, vision, cognition, pain control, bladder and bowel function. There is no proven treatment for the late stage of MS. This is an urgent and major unmet health need.
The MS SMART study directly addressed this need and evaluated three drugs (fluoxetine, riluzole and amiloride), all of which have shown some promise in MS, and in particular in Secondary Progressive Multiple Sclerosis. Although this study has not closed some sites surpassed recruitment targets despite the fact that recruitment of a patient population with limited mobility proved challenging.
This challenge was met in one site by ensuring that they worked around the patients scheduled and with the patient’s needs in mind, rather than the other way around. Good relationships cultivated with patients meant that they promoted the studies to other patients in MS liaison groups. Doctors not only promoted the study to the patients they were seeing but also to patient groups.
Phone: 00 44 113 34 34 555