30 years of the Scottish National MND Register

A doctor assisting a patient who is entering data into a tablet computer.

Dec 2019: The Scottish National MND Register, which has become an invaluable resource for research and to monitor care across the country, was founded in 1989, the first national MND register in the world.

What do you remember of the 1980s? The big hair and shoulder pads? Or perhaps Wham and Duran Duran?

What you perhaps aren't aware of is that 1989 marked the start of the first national register of people with MND, right here in Scotland.

In the early 1980s, clinicians and scientists were just becoming aware of the potential of genetics to transform medicine. At the same time, the first generation of desktop computers was becoming available, although there was no internet, and nobody had considered the possibility of digital health records.

Why a Register?

The Register was the far-sighted idea and the culmination of discussions among Dr Robert Swingler, Prof Charles Warlow and his then-Registrar Dr Richard Davenport. They realised that it would be difficult to enroll enough participants to study genetics in MND, but that a register could be very useful to study the clinical symptoms and features alongside the 'who/when/where/why' (epidemiology) of MND, about which very little was known. Observing the onset and course of MND in an individual can be insightful, but drawing scientific conclusions is more of a numbers game. In other words, if similar features can be found among people living with MND, those features are likely to be genuinely associated with the condition, rather than specific to an individual.

In that year, 114 people in Scotland newly diagnosed with MND were enrolled, and the National Register was born - the first in the world.

A few dark years

The register moved to Dundee with Dr Swingler and Raeburn Forbes, where it consisted of patient records and a DNA bank. Enrollment unfortunately lapsed for a few years due to lack of funding, but thanks to the persistence of Dr Swingler, the Register was revived in 1996 when Shuna Colville joined the team as the first MND Research Nurse. Shuna spent the next years buried in paperwork in dingy hospital basements, painstakingly searching patient records and collecting information from all over Scotland from those who had consented, to make the information available for research. Shuna's commitment laid the groundwork for everything that followed.

The next phase

In 2011 the baton was handed to Edinburgh and to the current team of Prof Siddharthan Chandran and Dr Suvankar Pal at the Euan MacDonald Centre and Anne Rowling Regenerative Neurology Clinic. The Register was digitalised by now, albeit in a fairly basic form. MND Nurse Consultant Judy Newton joined a team of seven MND Specialist Nurses across the country. The nurses now started to ask everyone newly diagnosed with MND for their permission to add them to the Register. Nearly everyone agreed, and so the Register was becoming a rich resource.

The launch of CARE-MND

Scotland's MND Clinical Specialists, June 2019

In 2016, largely thanks to the campaigning of the late MND activist Gordon Aikman, the number of MND Specialist Nurses was doubled, and funding transferred to the Scottish Government, putting Scotland in the enviable position of having the highest ratio of MND nurses to patients anywhere in the world. Now there were more nurses out in the community, visiting people with MND in their homes, every single case of MND from Dumfries to Shetland could be recorded.

The Register moved onto a new, hi-tech secure platform called CARE-MND, to enable real-time data entry and synchronisation. The same information is now collected about everyone with MND, approximately 200 cases every year. This standardisation is not only incredibly valuable for research, but also enables audit of care across the country, to ensure equity of care across Scotland's varied geography.

Gordon Aikman understood well the value of the Register, as is clear from an email he sent to Judy Newton in December 2016:

I know I bang on about this but I think the register is key to everything. The more people on the register, the better we can understand Scotland's MND population, identify gaps in service provision, drive up standards of care, attract clinical trials as well as demonstrate the impact of the enlarged team.

Reaping the rewards

The decades of investment in the MND Register by the Euan MacDonald Centre and MND Scotland, and the commitment of many individuals, are now paying off. Researchers and clinicians at the Euan MacDonald Centre and elsewhere can apply to access the relevant data to ask a particular research or audit question. If permission is granted, the data is anonymised (i.e. the identifying information is removed) before being shared. Some examples of findings that have arisen recently from CARE-MND are:

Research publications


  • Baseline audit of augmentative and alternative communication aid use by people with motor neurone disease in Scotland by Liz Elliott and others
  • An investigation of factors influencing prescribing practice of Riluzole in Scotland by Kiran Jayaprakash and others

Importantly, the CARE-MND platform empowers people living with MND in Scotland to give us, the researchers and healthcare professionals, permission to contact them. This means that when research opportunities and, in the near future, clinical trials, become available, we can directly contact people who might be interested in taking part, speeding up recruitment and meaning that results can come sooner.

Everyone who has been involved in the MND Register from its inception - the people with MND, funders, clinicians, nurses, and tech teams behind the scenes, should feel very proud of what it is helping to achieve. We wish the Scottish National Register a Happy 30th Birthday!

This article was published on: Tuesday, December 10, 2019