Resources for staff & sites
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.
Resources for 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 clinical trial costing guidance 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
Clinical Trial Costing Guidance for MND_v1_18May2023.pdfStudies open to new research sites
If you are a researcher or research site looking to explore new opportunities to get involved in MND healthcare research, below are studies that have confirmed they are open to new sites. You can find more details about each study via the links, and can reach out to the lead site to have an exploratory discussion.
Drug trials:
MAGNET: A phase 3 platform drug trial. Email magnet@tricals.org if you are interested in learning more about becoming a trial centre.
MND-SMART: A phase 2/3 platform drug trial. Email loth.mndsmart@nhs.scot if you are interested in learning more about becoming a trial centre.
Observational studies:
MND Register: Will consider new centres on a case-by-case basis, depending on their geographical location, to ensure the study has good coverage but without duplication. Email mndregister@kcl.ac.uk
Get in touch if you are a lead site and would like us to highlight your study being open to new sites.