A motor neurone disease (MND) charity is investing £5m to develop a new network of research nurses that will help people with the disease to join vital research trials.

The MND Association has committed to a five-year investment to build a first-of-its-kind nurse network across England, Wales and Northern Ireland.

“MND care centres and networks will have dedicated staff to offer new research opportunities to their patients”

Christopher McDermott

The charity has not confirmed at this stage how many nurses will be recruited but has said there will be 22 care centres that nurses will be recruited into.

The first nurses are expected to be in post by the end of the year.

The aim of this nurse network is to encourage everyone diagnosed with MND to take part in research.

Currently, there is wide variation in access to research trials depending on factors such as a patient’s location, how proactive they are in seeking opportunities and whether their healthcare team has knowledge of research trials taking place.

The MND Association said it hoped the nurse network would bring equitable access to research trials.

The specialist nurses will help people with MND navigate the clinical trial process, by identifying research opportunities that patients are eligible for, providing information and explaining what is involved.

The charity said that collaboration between nurses working within the network could also 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 she hoped the research nurse network would “bridge the gaps between researchers, care teams and people with MND”.

She said: “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.”

The research nurses will work alongside multidisciplinary teams from the charity who are already working in the 22 care centres to provide support and care co-ordination for people with MND.

Chair of the UK MND clinical studies network, Professor Christopher McDermott, 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.”



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