The UK Motor Neurone Disease Clinical Studies Group (UK MND CSG) represents a central component of the framework for MND research in the UK, providing the primary, but not sole, route through which NIHR Portfolio studies will be monitored and supported and through which new ideas for clinical research studies are developed.
The Group aims to bring together the expertise and enthusiasm to develop and improve both the quality of MND research in the UK and the NIHR Clinical Research Network (CRN) community.
Members provide local leadership to the network in their disease area and are responsible for overseeing the development and delivery of MND studies; supporting the active management of the network; and 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 and patient care, and to improve the speed, quality and integration of clinical research in trusts across the network.
The group is linked with the specialist MND Care Centres and networks in the four countries (England, Wales, Scotland and Northern Ireland) throughout the UK and thus is well placed to ensure that high-quality clinical MND research is made available to NHS patients in all sectors and geographical areas of the Clinical Research Network.
The group has a Chair and Vice chair to ensure continual leadership of the groups 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, funding bodies, patient and carer and multi-professional members 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 working groups and projects that derive from its members.
The group has built upon the existing clinical research activity and clinical strengths within the UK to ensure high quality delivery of a well-designed and balanced portfolio of both commercial and non-commercial research in MND. The group has facilitated multi-centre collaborations, leadership, research development and bought new clinical studies through to the clinical environment in an effective and timely manner.
Find out more about research involving people living with MND in the UK here
The MND CSG meets monthly via teleconference and has an annual face-to-face meeting to discuss strategic planning. Sub groups and working parties are established between these meetings to take forward new projects and ideas that the group has.
On an annual basis strategic priorities are developed by the group to facilitate development of new research ideas and ensure that the gaps in clinical care and scientific research are highlighted amongst the group and where feasible writing groups are set up to develop these areas.
"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, 1049 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