Resources for staff & sites

Support your patients

Our website provides information about the MND healthcare research studies that are currently open to recruitment across the UK. We work closely with NIHR Research Delivery 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.

Research studies

Calendar of events for MND healthcare and research staff

Education and training

MND-specific resources

The MND Professionals' Community of Practice (CoP) is a peer-led group of health and social care professionals who encourage and develop improvements in care for people living with or affected by MND.

Hosted by the MND Association, it is open to all, regardless of whether or not they are affiliated with an MND Association Care Centre or Network. The CoP sits harmoniously alongside this group – with the CoP focusing on clinical care, and the UK MND Clinical and Healthcare Research Community focusing on research.

There are many resources available on the "Professionals" area of the MND Association website, aimed at healthcare professionals who provide care and support for people living with or affected by MND, including:

Publications and resources
Information about the management of MND
Education and training events
Recordings of past webinars that can be viewed in your own time
Support for professionals

EDUCALS is an online learning network for healthcare professionals, endorsed by the European Network to Cure ALS (ENCALS). Four modules are currently available:

ALS Disease Overview
ALS Diagnosis and Referral
Diagnostic Tools and Management Strategies
ALS Trial Design

Healthcare research resources

New to health and care research?

The National Institute for Health and Care Research (NIHR) offers support and training for people who are new to health and care research. You can find details of their online courses here, including courses "What is health and care research?", "Starting Out in Health and Social Care Research" and "Improving Healthcare through Clinical Research".

NIHR also offers free Good Clinical Practice (GCP) training courses for people supporting clinical research delivery at the NHS, UK universities and other publicly funded organisations in England. You can access GCP training via NIHR Learn.

Developing or experienced researcher?

NIHR Learn provides training courses focused around research delivery, such as Informed Consent, Fundamentals for Laboratory Staff, Fundamentals for IMP Management, Principal Investigator Training, Remote Consent, Research Inclusion and many more.

NIHR also offers other training and support resources, such as:

Clinician Researcher Credentials Framework Master's level qualifications for healthcare practitioners for experienced healthcare practitioners from all professional backgrounds who want to take on leadership roles in clinical research delivery.
Associate PI Scheme to develop doctors, nurses, physician associates and allied health professionals who do not undertake research as part of their usual role, to help them become the PIs of the future.

For nurses and midwives:

Principal Investigator Pipeline Programme (PIPP) to support research delivery nurses and midwives to become Principal Investigators (PIs) to deliver NIHR portfolio studies.
Senior Research Leader Programme for nurses and midwives A 3-year programme to further develop the research leadership skills of senior nurses and midwives (band 8b level or equivalent in England) involved in research.

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.pdf

Studies 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 and other interventional studies:

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 mnd-smart@ed.ac.uk if you are interested in learning more about becoming a trial centre.

OptiCALS RCT: A study to evaluate a nutritional management intervention for patients with MND. Email the Study Managers, Elaine Scott and Gemma Hackney, OptiCALS@sheffield.ac.uk to explore becoming a site.

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.

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