The MND Association is investing £5m into building a network of research nurses aimed at enabling everyone diagnosed with the disease to take part in vital research.
The charity will build “a coordinated network of MND Association research nurses” across England, Wales and Northern Ireland, with the first nurses expected to be in post by the end of the year.
MND is a fatal, rapidly progressing disease that affects the brain and spinal cord, and attacks the nerves that control movement so muscles no longer work. It can leave people locked in a failing body, unable to move, talk and eventually breathe. It affects more than 5,000 adults in the UK at any one time.
Currently, access to trials depends on a number of factors. This can include a person’s proactivity in seeking opportunities, the knowledge their health and social care team has of research trials and where they live, as many clinical trials only take place in a small number of locations. The MND Association Research Nurse Network aims to bring equitable access, with the opportunity to take part in clinical research and trials part of each person’s holistic care.
The specialist nurses will help people with MND navigate the research trial process – providing information, identifying trials and research opportunities patients are eligible for, explaining what’s involved, and supporting their ongoing involvement. Collaboration across the Network will support the sharing of outcomes, so successful research can be put into practice quickly.
MND Association research nurses will work alongside multidisciplinary teams in care centres and networks where the MND Association currently funds the coordination of care and support for people with MND.
The first nurses are expected to be recruited later this year with a programme of roll out spanning the next three years.
Sally Hughes, director of services and partnerships at the MND Association said: “There is no effective treatment for people with MND, which is a terminal illness. The opportunity to take part in a clinical trial offers some hope to people who often feel there is none. Yet currently that choice isn’t available to everyone. We believe it should be.
“The MND Association Research Nurse Network will bridge the gaps between researchers, care teams and people with MND. It will take research and trials directly to people with MND through their local care centres and networks, ensuring access to research is an integral part of their holistic care.
“We know people with MND often spend hours researching and applying to take part in trials only to be given the frustrating news they aren’t eligible. MND Association Research Nurses will do that for them, providing all the guidance and support each person needs to make what is a really personal choice, and then guiding them through the process.”
Dr Brian Dickie MBE, director of research development at the MND Association, said: “Historically, there have been limited opportunities for people with MND to access clinical trials. The recent explosion of new scientific understanding of MND is creating exciting new treatment strategies which, in turn, are starting to generate opportunities for more trials. We want to create an environment where everyone diagnosed with the disease has options.
“By establishing the MND Association Research Nurse Network we believe more people will be recruited into trials, more quickly and that can only help speed up the pace of research towards potential treatments and ultimately a cure for MND.”
Eleanor Dalley, from North London, was diagnosed with MND in July 2019. She is now taking part in an early access programme for a drug called Tofersen, suitable for people whose MND is caused by a mutation in the SOD1 gene mutation. However, she had to fight for over a year to gain access to the drug.
She said: “Being signed up to an early access programme was part of the reason I was able to share my diagnosis with my daughter. It gives her hope there might be a cure in the future…she was able to see the positive despite my diagnosis.
“Unfortunately, some people with MND don’t have time. We want more access, maybe more understanding as to why you can be on certain trials and why you can’t others. Ultimately, we all want hope. We all want to be able to have this miracle treatment, cure, whatever, to make sure that we’re going to be here for longer with our friends and with our families. I think we need to do more just to widen the understanding of research programmes.
“This Research Network would offer that, having someone there guiding us, giving us information and helping us make really informed decisions would be a big step forward for so many people with MND who need the hope that being involved in receiving a new drug has given me.”
Professor of translational neurology Christopher McDermott, chair of the UK MND Clinical Studies Network, said: “I have noticed a steady decline in MND centres’ ability to participate in MND research in recent years as a result of the increasing complexities of trials, the pressures within the NHS and the prioritisation of research support for other areas. This investment by the MND Association will mean MND Care Centres and Networks will have dedicated staff to offer new research opportunities to their patients.
“We know that patients want the opportunity to participate in research and that health professionals at MND Care Centres want to be able to offer this to their patients.”
Tomorrow: Read our in-depth interview with Dr Brian Dickie MBE, director of research development at the MND Association.
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