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The UK MND Clinical Studies Group is a national network of experienced MND clinical researchers located across the whole of the UK, which provides the geographical coverage to conduct large multi-centre MND trials that are able to deliver on time and to target.
Positive reasons for bringing commercial research into the UK
Positive reasons for bringing commercial research into the UK
The Group unites leading MND researchers across the whole of the UK. Established in 2009, the group is composed of world-class experts in MND, with experienced researchers and patient advocacy groups working together to promote research to develop better treatments and care for people affected by MND.
We work with industry to support early feasibility assessments, and to quickly identify sites that have the capabilities and capacity to deliver their trial. Group membership represents research sites across the whole of the UK. By working directly with investigators, rather than their R&D units, we are able to provide accurate and up-to-date information, and implement strategies to increase capacity or develop capabilities to support MND trials. We encourage commercial sponsors to engage with our group at the earliest stages of development, to ensure we can feed into study designs and ensure they will be deliverable in the UK.
Clinical Trial Costing Guidance for MND_v1_18May2023.pdfGuidance Tool for costing clinical trials
Guidance Tool for costing clinical trials
The group has created a costing guidance tool, aimed at helping industry and trial sites determine fair and uniform costing throughout all clinical trial sites in the UK.
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. 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
Early feasibility assessment
Early feasibility assessment
The Group can provide early advice on whether a potential study will be supported by the clinical community and will be feasible within the NHS (eg available resources, acceptability of the control regimen, compatibility with UK clinical practice). We encourage commercial sponsors to engage with the Group at the earliest stages of development, to ensure that we can feed into study designs and ensure they will be deliverable in the UK. The group has extensive experience working with NHS Trusts across the country to develop and implement strategies to increase their capacity to deliver commercial research, and a strong track record of collaborative research.
Identifying participating sites
Identifying participating sites
Group membership represents research sites across the whole of the UK, and members work closely with other investigators within their region, to ensure that the Group is able to reach the whole of the UK. We have intelligence on the facilities and capabilities that each site has, along with their capacity for new trials. This information allows us to work with industry partners to quickly identify potential sites with the capabilities to delivery their trial, facilitate quick communications and support investigators to reduce repetition of information regularly requested in expressions of interest. By working directly with investigators, rather than their R&D units, we are able to provide accurate and up-to-date information, and implement strategies to increase capacity or develop capabilities to support MND trials.
Ways of working
Ways of working
The group holds information in strict confidence and members are used to dealing with commercially sensitive material; industrial parties can be reassured that documents and discussions remain confidential. The Group coordinator is experienced with setting up complex multi-centre trials and can guide companies through the ethical, regulatory and research governance processes in the UK.
Key stakeholders
Key stakeholders
The group works closely with our partners, including:
UK Clinical Research Network (CRN) – Neurodegeneration speciality
Allied healthcare professionals working within MND
Patient advisory groups and representatives of people affected by MND
The wider MND community
Commercial partners
Performance and delivery
Performance and delivery
The Group has an excellent track record, having worked together effectively since 2009 to design and deliver many complex multi-centre research studies, including academic-led drug trials. Members are experienced at securing grant funding, and ensuring that research outcomes are carried forward into clinical practice.
The Group has grown steadily over the years and successfully supports a mixed portfolio of academic-led and commercial research. Through the group, and the effective communication channels it provides across the UK network, we are able to support the increasingly complex trials that have come through the pipeline in recent years.
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