Friday, 26 July 2024
Research
To mark Doddie’s birthday last month, we announced the launch of our Clinical Research Infrastructure Awards, which will enhance UK MND clinical research capabilities and ensure more people living with MND can access a clinical trial.
When Doddie was diagnosed in 2016, there were few MND clinical trials occurring in the UK. Since then, there has been significant progress and an increased investment into UK MND trials, including almost £3 million from My Name’5 Doddie Foundation. Today, the landscape is very different and there are many clinical trials running across the UK. However, despite the increasing number of trials, not all centres are currently able to deliver them at pace due to a lack of specialised staff with dedicated time to spend on MND trials.
Doddie was passionate about the need for more MND clinical trials, to give newly diagnosed people hope and purpose, and to accelerate the search for effective treatments. This year, we will commit an additional half million pounds to support individual trial centres, enabling them to buy-out the time of specialised staff to work on MND clinical trials.
We have already invested almost £3 million to help trial centres recruit the staff they need to deliver MND clinical trials. This includes 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 trial. For example, in Ipswich our funding allowed Kate Barber, an MND Specialist Research Nurse to dedicate one day 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.
We have also provided funding to enable MND trial delivery In Newcastle, where we supported 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 in Newcastle 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.
We were pleased to see the MND Association’s announcement in February this year of a £5 million investment to give more people with MND access to clinical trials. This funding will support clinical research nurses in MND Care Centres and Networks. We look forward to adding our complementary funding to this rapidly evolving landscape.
Our 2024 Clinical Research Infrastructure Awards will support clinical trial staff specialising in the delivery of MND trials. They will enable 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.
They do not aim to provide long-term funding for clinical research infrastructure, but to provide bridge funding that will help trial centres demonstrate their ability to set-up or expand their trial portfolio, so they can seek longer-term support to sustain activity.
In 2024, we will allocate £500,000 to these awards and are expecting to provide awards of 1-3 years. We do not expect to fund whole salaries of individuals, but contribute to salaries of existing staff who will then be able to allocate time to MND trials.
Our call for applications will launch on 5th August 2024 and the application deadline will be midday on the 22nd November. For more information, please see our apply for funding page.
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