The UK Motor Neurone Disease Clinical Studies Group (UK MND CSG) represents a central component of the framework for MND research in the UK.

It provides the primary route through which NIHR Portfolio studies will be 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 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 research advice

  • Act as an expert panel for novice MND researchers and new principal investigators

  • Ensure patient and public involvement in activities

  • Seek opportunities to become involved in initiatives in other related disease areas

Members provide local leadership to the network and are responsible for

  • overseeing the development and delivery of MND studies

  • 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 increase the integration of health research with patient 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 of the UK MND CSG has been composed to reflect, as reasonably as possible, the various agencies involved in the development and implementation of high quality protocols involved in MND research. The group includes clinical, scientific, and multi-professional members, as well as funding bodies, and is drawn from a wide geographical area to ensure that each research network has representation.

The UK MND CSG seeks to involve patients and carers in all aspects of its work, and has two patients and a carer representative on 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 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.

Our research: Commercial and non-commercial

The group has built upon the existing clinical research activity and clinical strengths within the UK to ensure reliable delivery of a well-designed and balanced portfolio of both commercial and non-commercial 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 MND CSG meets monthly via teleconference 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 that the group has.

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 disease portfolio, and how it relates to other Division 4 topic portfolio activity.

  • Liaise with chief investigators 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 (both commercial and non-commercial) 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 CRN Coordinating Centre and LCRNs 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