Health and Social Care Secretary Steve Barclay has met with leading representatives from the motor neurone disease (MND) research community to discuss ways to fast-track research into the disease and to look at how the government and sector can work better together.
The roundtable was attended by medical research charity LifeArc’s Dr Catriona Crombie, MND charities My Name’5 Doddie Foundation, MND Association, and MND Scotland, as well as patients.
The government has committed to continuing to work closely with the research sector to cut red tape, making funding easier to access, and boost research into new treatments. The roundtable was an opportunity for stakeholders to discuss and agree proposals to accelerate progress in MND research and to provide patients with access to the care they need as soon as treatments are discovered. The Health and Social Care Secretary visited the King’s College Hospital MND Care and Research Centre to see the benefits of government funding for MND research.
The NHS App has been updated to allow users to view and sign up to health research, including studies into MND and other conditions. Patients can now take part in research via the NHS App through the Be Part of Research platform. This allows people to participate in a range of research, including studies that test new treatments via interviews or surveys, which may take place in hospitals, GP practices, or other community-based health and social care locations, or can be done at home, online, or by telephone.
The government cut red tape in December to speed up £50 million in funding for MND research across the UK, with £29.5 million of immediate investment being made through specialist research centers to benefit NHS patients. There are more clinical trials than ever before, with some delivering promising results, such as research from the Sheffield Biomedical Research Centre into the drug Tofersen, which may slow the progression of the disease for some people living with MND. Discussions are underway to propose an additional £2 million to focus on analyzing existing data on MND and to help develop new treatments, as well as £6 million to help move laboratory discoveries into clinical trials.
CEO of the NIHR, Professor Lucy Chappell, stated that the roundtable was a great opportunity to bring patient groups, world-leading experts, and government research funders together. She emphasized the need for everyone to work together to accelerate progress in MND research, with the charities and campaigners having done so much to focus attention, and the government being committed to delivering resources.
Health and Social Care Secretary Steve Barclay said: "Motor neurone disease can have a devastating impact on people’s lives, and I’m working with leading researchers to accelerate research and help find a cure as soon as we can. We have made strong progress since we pledged £50 million for MND research with new treatments being developed and promising results from clinical trials reported, but I know there is still more to do.”
The roundtable represents a significant step forward in the fight against MND, with the government, researchers, and charities coming together to collaborate and accelerate progress. With access to funding and the NHS App making it easier for people to take part in research, the outlook for those living with MND is brighter than ever before.
Photo by jesse orrico on Unsplash
