Get involved

Find out how to take part in or support MND clinical & healthcare research as a patient, healthcare professional, research site or stakeholder.

Patients

Research studies

There are many MND research studies taking place across the UK, and new studies open to recruitment on a regular basis.

Please be aware that all studies are required to have eligibility criteria to ensure that the study is carried out safely and the research question is answered, therefore it might be that some of the studies are not suitable for you to participate in.

Patient and public engagement

The Clinical Studies Group seeks to involve patients and carers in all aspects of our work, and appreciates input from our lay members who provide their perspective as a person affected by MND into the development, management and reporting of clinical studies. If you would like to become involved with the group as a lay member, please email us.

Healthcare professionals

Support your patients

Our website provides information about the MND clinical & healthcare research studies that are currently open to recruitment across the UK.  We work closely with NIHR Clinical Research Network, patient advocacy groups and other stakeholders to support and enable patients to take part in research.

Please signpost your patients to the Research Studies webpages so that they can explore which research opportunities might be right for them, and support them by reviewing study eligibility criteria and referring to participating sites where appropriate.  

Join the national MND Clinical and Healthcare Research Community

UK MND Clinical Research Community logo

Our group is keen to improve communications and collaborative working with the wider research community, including clinical research fellows, research nurses and all staff that support research delivery at sites across the UK; and also with healthcare professionals involved in delivering MND clinical care so that they can support and advise their patients about latest research developments and opportunities.

We invite all staff working on MND clinical & healthcare research projects and healthcare professionals involved in MND clinical care within the UK to join our mailing list, to keep up-to-date with research developments and opportunities.

Sign up to join the mailing list and receive newsletters and other updates.

Get involved as a researcher

We have built a network of MND researchers across the UK. We are keen to expand this to ensure every patient diagnosed with MND has the opportunity to participate in research should they wish to. If you are a clinician or other healthcare professional who is carrying out MND research as a Principal Investigator, or are keen to become involved, please consider becoming a member of the group, or contact us to explore how we can support you.

The group oversees the delivery of the NIHR CRN Portfolio of MND studies and recommends ways to improve the feasibility of studies to ensure they are able to meet their targets. We can also provide early advice on whether a potential study will be supported by the clinical community, and the feasibility of carrying out the planned research successfully within the patient population. The group meets monthly by videoconference. If you are an MND researcher and would like to contact the group about a project, get in touch by email: info.ukmndcsg@gmail.com

Research sites

We are developing a suite of documents to support clinical trial sites across the UK to take part in and successfully deliver MND clinical & healthcare research.  The first of these is a costing guidance document for commercial MND trials.

Download the guidance document here: Clinical Trial Costing Guidance for MND 

The intention is to encourage sponsors to utilise this guidance when they first generate a study budget in the national costing tool (the NIHR interactive costing tool, or iCT), and then support the lead site when they review the budget during the national contract value review. Alternatively, participating sites can refer to the guidance document if the national contract review hasn’t accounted for all costs.  The goal is to reduce the need for protracted budget negotiations at each site, therefore reducing workload and speeding up set-up; and to have a fairer and more transparent costing process so that there is less budget variability between sites.

For additional information or to discuss how the MND CSG can help industry and sites with trial costings please contact info.ukmndcsg@gmail.com

Stakeholders

Some of the key stakeholders we work with to support the design and delivery of research, and implementation of research outcomes, are:

If you are interested in the work we do and would like to find out more, or feel that the group can support the research that you are involved in, email us.

Help us beat MND and make a difference