MND Association’s £5 million investment to give more people with MND access to clinical research and trials

The MND Association is investing up to £5 million in developing a new network of MND Association Research Nurses across England, Wales and Northern Ireland, with the aim of giving everyone diagnosed with the disease opportunity to take part in vital research.

The charity has committed to a five year investment to build a first-of-its-kind co-ordinated network of MND Association Research Nurses. The first nurses are expected to be in post by the end of the year.

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 will bring equitable access, with the opportunity to take part in clinical research and trials part of each person’s holistic care.

The 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. Nurses will work alongside established multidisciplinary teams in Care Centres and Networks.

Specifically, MND Association Research Nurses will help individuals 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. They will provide all the guidance and support each person needs to make what is a really personal choice, and then guide them through the process. Importantly, collaboration across the Network will support the sharing of outcomes, so successful research can be put into practice quickly.

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.”

Progress of the Research Nurse Network will be shared on the MND Association’s website.