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MND Register

MND Register

Why we have developed a national register of people with MND in Scotland.

The Scottish MND Register, which dates from 1989, is a database of people diagnosed with MND and was the first of its kind in the world.

Everyone diagnosed with MND in Scotland is invited to join the register so that their anonymised data can be used for research. Participants are also given the opportunity to sign up to be contacted about future research studies and clinical trials.

By investigating the data held on the Register, this has helped us to develop a deeper understanding of many aspects of MND including an accurate picture of the number of people with MND in Scotland and the way the condition progresses.

We are working to bring more drug trials to Scotland and the Scottish MND Register will help us to ensure as many people as possible have the opportunity to take part.

The Scottish MND Register is part of CARE-MND. 

CARE-MND

In 2017, jointly with MND Scotland and the Anne Rowling Regenerative Neurology Clinic, we launched CARE-MND. This is a national platform empowering people living with MND in Scotland to directly influence the provision of clinical care and take part in research.

CARE-MND, part of Rowling CARE holds the details of everyone diagnosed with MND in Scotland and is helping us improve clinical care across the country. The platform enables a team of healthcare professionals to audit the provision of care nationally and by individual health board. This ensures that the care provided to people with MND across the country is of equally high quality and it can highlight areas where care can be improved.

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. This is also, in part, due to the national provision of clinical nurse specialists for MND.

CARE-MND website

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