Motor Neurone Disease highlight notice

This NIHR highlight notice invites proposals for Motor Neurone Disease research to address important health and social care questions.
  • Published: 20 June 2022
  • Version: V1 - June 2022
  • 3 min read

Background 

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 funding opportunity

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. You 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: 

  • 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

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.

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, you 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:

In your application, you should:

  • justify the importance of your proposed research and its potential impact on patients and/or their carers
  • clearly state how your proposed research addresses an explicit evidence gap and how the research adds value to the existing NIHR research portfolio
  • include patient and public involvement within the application and study design
  • consider contacting your local RDS or equivalent for support where available

See our motor neurone disease funding opportunities

Contact details

If you require further guidance, please contact the Programme which you feel is the most appropriate for your research idea. You may also wish to contact your local Research Support Service (RSS) to discuss your research idea.