a doctor and patient sitting at a table smiling and looking at information on a tablet computer

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MND Register

MND Register

Why we have developed a national register of people with MND, and our plans for clinical trials.

The  Scottish National MND Register, which dates from the 1990s, is a database of people living with MND and was the first of its kind in the world. Scotland, as a small country with a unified health service, is in the enviable position of being able to identify almost every single case of MND nationwide.

Using the Register, we have developed a deeper understanding of the rate of MND in Scotland, the way the condition progresses, and the gene changes that can cause it.


In 2017, jointly with MND Scotland, we launched a newly revamped Register called CARE-MND. Importantly, CARE-MND can, at the click of a mouse, provide a list of people living with MND who want to take part in drug trials. Although seemingly obvious, this facility is rarely available worldwide. It is very attractive to international pharmaceutical companies.

We are working to bring drug trials to Scotland to give people here the best opportunities to take part.