Last year, we announced the launch of our Clinical Research Infrastructure Awards, which promised to enhance MND clinical research capabilities and ensure more people living with MND in the UK can access a clinical trial.
Tuesday, 18 November 2025
Research
Last year, we announced the launch of our Clinical Research Infrastructure Awards, which promised to enhance MND clinical research capabilities and ensure more people living with MND in the UK can access a clinical trial. We said we would commit £500,000, designed to be used by existing trial centres to invest in additional specialised staff, and ‘buy out’ their time to work on MND clinical trials.
Following his diagnosis in 2016, Doddie was passionate about the need for more clinical trials, to give hope and purpose to others in a similar position. Since then, the landscape has changed significantly and there are many more trials running across the UK, thanks to increased investment including almost £3 million from My Name’5 Doddie Foundation. However, despite the increased number of trials ongoing, many centres are not able to deliver them as quickly or effectively as possible due to a lack of dedicated and specialised staff spending time on MND trials.
The Clinical Research Infrastructure Awards were created to remedy exactly that; support the employment and retention of clinical trial staff specialising in the delivery of MND trials. Additional and dedicated staff enable these centres to either begin recruiting to MND trials for the first time, or provide additional capacity at sites that already recruit to MND trials that have the potential to expand their portfolio of trials and increase recruitment numbers.
Following the strength of the award applications, we increased our total commitment from £500,000 to over £780,000, enabling even more trial centres to secure additional and dedicated staff time on MND trials specifically.
The seven new sites which have received Clinical Research Infrastructure Awards, along with a pilot site that was funded earlier this year, are:
The landscape of MND clinical trials has evolved considerably over the last nine years. When Doddie was diagnosed in 2016, there were few MND clinical trials in the UK and none that he could immediately take part in. Since then, and over and above the Clinical Research Infrastructure Awards, we have invested £3 million to help trial centres recruit the staff they need to deliver clinical trials, including support for the delivery of MND-SMART and TRICALS studies. Our funding for MND-SMART enabled clinical trial specialists across the country to dedicate some of their time to MND-SMART trials. For example, in Ipswich our funding allowed Kate Barber, and MND Specialist Research Nurse to dedicate one date a week to the trial. See our previous article where we met with Kate and another research nurse, Dee, to talk about their role in delivering MND-SMART.
In a similar vein, we have also provided funding to enable MND trial delivery in Newcastle, where we part-funded a MND research trials coordinator/nurse. Prior to our funding, trial participation in Newcastle was becoming increasingly difficult, however the addition of the post transformed the landscape of trial activity such that they are now actively recruiting to several national and local clinical trials, as well as looking to expand where appropriate.
The support we have received in Newcastle has been absolutely fundamental to a sea change in MND trial conduct and activity in Newcastle. It's been a great thing and I only hope such support continues and might reasonably be rolled out elsewhere. I think this is a highly effective and tangible use of funds.
Driven by the learnings we have gathered through these prior investments and through working closely with the MND research community, we are hopeful that this new model will be successful in delivering impact for people living with MND.
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