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Motor Neurone Disease highlight notice


Published: 20 June 2022

Version: 1.0

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This NIHR highlight notice invites proposals for Motor Neurone Disease research to address important health and social care questions.


Motor Neurone Disease (MND) is a devastating neurodegenerative disease, characterised by loss of motor neurone function. In patients suffering with MND, signals from the motor neurones gradually stop reaching the muscles causing them to weaken, stiffen and waste. MND affects adults of any age but is more likely to affect people over the age of 50. Currently, there are approximately 5000 people living with MND in the UK, and the lifetime risk of developing MND is 1 in 300. The average life expectancy of someone with MND from diagnosis is just 18 months and there is currently no cure. Treatments for MND therefore focus on helping reduce the impact MND has on a person’s daily life. Research on MND is at an exciting juncture. Significant advances in understanding disease pathogenesis and identifying therapeutic targets are attracting unprecedented interest from industry and a genuine optimism that this disease is tractable.

Specific requirements for this call

The NIHR is inviting research proposals that seek to develop the critical underlying infrastructure to accelerate progress in and learning from MND clinical trials. This will build on existing initiatives, networks and collaborations that capitalise on recent progress in drug development, to improve trial design and participation, validate new patient relevant outcomes and validate identified clinical biomarkers that are known to correlate to a clinical endpoint.

NIHR is interested in funding studies that use innovative trial designs that have the potential to increase patient participation in clinical studies. This could be through the use of stratification, predictive modelling, and/or the use of novel study designs, such as platform trials and n-of-1 studies. Applicants should also consider the efficiency of studies to reduce the burden on participants, such as the use of remote monitoring or bio sampling. 

Some examples of potential areas of interest are given below. This is not an exhaustive list and other research within the remit of the participating NIHR funding programmes and relevant to this call will also be considered.

  • Research on already identified biomarkers to ameliorate diagnosis, improve prognostic accuracy and determine treatment efficacy; Biomarkers must correlate with a known clinical endpoint;
  • Testing hypotheses concerning gene variants within clinical trials, to understand differential responses, enhance gene therapy trial design, trial selection and personalized precision medicine;
  • Research to develop and evaluate new technologies for their potential to improve quality of life;
  • Validating Patient Related Outcome Measures (PROMs) and assessing the feasibility of using a PROM in appropriate care settings;
  • Research into care management, planning and coordination including but not limited to workforce and care navigators; informal carer support, respite services and day services; models of care including specialist hubs and interface with sectors and agencies; and the use of remote services and digitalised self-management support;
  • Training and awareness for general staff in hospitals e.g. around end-of-life care;

Applications which involve investigators spanning a range of specialties are encouraged and partnership with national charities and industry are welcomed.

For the purpose of this particular call, the NIHR research programmes will not be able to support:

  • Causes of MND including biochemical processes involved in the disease progression;
  • The development of new treatment strategies for MND;
  • Studies identifying new biomarkers;
  • Developing new biobanks;
  • Developing new PROMS;

For studies positioned early in the developmental pathway or which focus on the mechanistic understanding of disease, applicants may wish to refer to UK Research and Innovation (UKRI) funding opportunities, including the Medical Research Council (MRC) translational research schemes.

How to apply

Research proposals must be within remit of at least one participating NIHR Programme. The Programmes involved in this call are:

Applicants should note that:

  • Applicants should justify the importance of their proposed research and its potential impact on patients and/or their carers;
  • Applicants should clearly state how their proposed research addresses an explicit evidence gap and how the research adds value to the existing NIHR research portfolio;
  • Patient and public involvement should be included within the application and study design;
  • Where available, applicants should consider contacting their local RDS or equivalent for support;

Contact information

Applicants who require further guidance may should contact the Programme they feel is the most appropriate for their research idea. Applicants may also wish to contact their local Research Design Service (RDS) to discuss their research idea.   

Deadline for proposals

For further information on the participating programmes including open and close dates please see the call information page. Please note that submission dates vary and completed forms must be submitted by the date specified.