About the group
The UK MND Clinical Studies Group was established in 2009 to promote research to develop better treatments and care for people affected by MND. We are a national group, bringing together clinical researchers (principal investigators) from across the UK, along with representatives from patient advocacy groups, to support the development and delivery of MND healthcare research projects. We are now the healthcare research arm of the UK Motor Neuron Disease Research Institute (UK MND RI).
The group represents a central component of the framework for MND clinical research within the UK. It provides the primary route through which NIHR RDN (National Institute for Health and Care Research Research Delivery Network) Portfolio studies are monitored and supported, and through which new ideas for clinical research studies are developed.
On this page:
Our aims
Provide strategic oversight and support, to monitor development and delivery of MND research across the UK
Identify gaps in MND clinical research and agree on priority areas
Propose and develop new trials and other well-designed studies
Consider studies proposed by others
Consider international studies for inclusion in the portfolio
Provide MND clinical research advice
Act as an expert panel for new MND researchers and new principal investigators
Ensure patient and public involvement in activities
Seek opportunities to become involved in initiatives in other related therapy areas
Members provide local leadership to the network and are responsible for:
overseeing the development and delivery of MND studies in their region
supporting the active management of the network
ensuring the needs of industry are met
They support the development of new ways of working within the local workforce, to integrate healthcare research with patients' clinical care, and to improve the speed, quality and integration of clinical research in trusts across the network.
Our structure
The group is linked with the specialist MND Care Centres and networks in the four countries throughout the UK (England, Wales, Scotland and Northern Ireland). The Group is well placed to ensure that high-quality clinical research is made available to NHS patients in all sectors and geographical areas of the Clinical Research Network.
The Group has a chair and deputy chair to ensure continual leadership of the group's objectives. Membership has been composed to reflect the various agencies involved in the development and implementation of high quality MND research. The group includes clinical, scientific, and multi-professional members, as well as funding bodies, and is drawn from across the UK to ensure that each geographical region has representation. The Group seeks to involve patients and carers in all aspects of its work, and has patients and a carer representatives within the Group.
There is a balance between experienced members with a strong track record in clinical studies and less experienced, but equally committed, members showing the potential to become leaders in the research community. Links with local Clinical Research Networks are encouraged. The Group has a national coordinator who has responsibility for assisting the Group in achieving its aims and objectives, and supporting working groups and projects that derive from its members.
Find out more about our members.
Research delivery: Industry and academic-led studies
We have built upon the existing clinical research activity and clinical strengths established across the UK, to ensure reliable delivery of a well-designed and balanced portfolio of both industry-led and non-commercial (academic) research in MND.
The Group has provided leadership to facilitate multi-centre collaborations to support research development, bringing new studies through to the clinical environment in an effective and timely manner.
Find out more about research involving people living with MND
How we do it
The group meets monthly via video call, and has an annual face-to-face meeting to discuss strategic planning. We establish working groups between these meetings to take forward new projects and ideas. If you would like to join us, visit get involved.
Key activities
Provide strategic oversight to monitor study performance and have a complete overview of the national portfolio of MND studies, and how this relates to research activity in other neurodegenerative diseases.
Liaise with chief investigators and study teams regarding study performance.
Develop and implement study facilitation policies.
Make recommendations to LCRNs on the allocation of network resources to support study delivery.
Provide early advice on whether a potential study will be supported by the clinical community and will be feasible within the NHS (eg available resources such as MRI, acceptability of the control regimen, compatibility with UK clinical practice).
Provide advice to the NIHR Division 4 portfolio team on all topic aspects of the portfolio.
Make recommendations/provide reports to the RDN Coordinating Centre and RRDNs regarding the development of new ways of working to integrate patient care and research in the NHS to support portfolio studies.
Strategic priorities
Strategic priorities are identified by the Group on an annual basis, to facilitate development of new research ideas and ensure that gaps in clinical care and scientific research are highlighted amongst the group. Where feasible, writing groups are set up to develop these areas.
What people say
"The Trajectories of Outcomes in Neurological Conditions (TONiC) study is a major, longitudinal study examining factors impacting on quality of life in MND. By 1 June 2017, 1,049 people with MND had joined the study and we are keen to follow up as many as possible to see how care can be adapted to improve outcomes and thus quality of life. Such massive recruitment requires considerable energy and commitment from many collaborating sites and the support of the UK MND CSG has been pivotal."
Professor Carolyn Young, Chief Investigator and Consultant Neurologist
"The clinical studies group works together to develop the evidence to make sure we deliver the best care to people with MND and to give people living with MND in the UK the opportunity to take part in the most promising studies of new treatments."
Professor Christopher McDermott, Chair of the UK MND CSG and Consultant Neurologist