Our redesigned MND Register website will help to track the number of people living with MND, powering vital research into why, where, and how the disease happens.

What is the MND Register?

We’re thrilled to announce the launch of our new website for the MND Register, a national database providing the an accurate and up-to-date picture of MND in England, Wales, and Northern Ireland.

The MND Register plays a crucial role in helping researchers, clinicians and policymakers understand how many people are living with motor neuron disease, how it progresses, and how different factors may influence outcomes.

It’s a vital research tool to understand, and ultimately stop, this devastating disease.

It is thought that around 5,000 people in the UK are living with MND at any one time, but there is currently no single, definitive data source confirming this. The Register aims to fill that gap.

“As the pursuit of effective therapies for MND continues, it’s vital that we have the most up-to-date data, not only on how many people are affected, but also the pattern of disease, how each person’s MND progresses, and how external environmental or lifestyle factors may contribute.” said Professor Ammar Al-Chalabi, Professor of Neurology and Complex Disease Genetics at King’s College London and co-director of the UK MND Research Institute. “This Register helps us to progress our work and contribute to new breakthroughs.”

Why we’re investing in the Register

The MND Register is part of the UK MND Research Institute’s broader commitment to building the national research infrastructure needed to speed up discoveries and clinical trials. By collecting anonymised clinical data from across the UK, the Register can help us:

  • Better understand of disease prevalence and variation

  • Improve resource planning and care delivery

  • Faster, more targeted recruitment into research studies and trials

  • New research into risk factors and possible causes of MND

The Register is funded by the MND Association alongside several key charitable supporters, including MND Scotland, the My Name’5 Doddie Foundation, LifeArc, and others. It sits alongside Scotland’s own Care-MND platform, which collects similar data from across the Scottish health system.

“We’re delighted researchers from around the world are able to use this vital resource to investigate different factors associated with MND. ” said Dr Sophie Nyberg, Research Programmes and Partnerships Manager at the MND Association. “The project was developed in support of our shared and determined goal of finding treatments and ultimately a cure for this devastating disease.”

What’s next

The newly relaunched MND Register website provides a clear, accessible entry point for clinicians, researchers, and people with MND who want to understand how their data is helping drive progress.

We also want to ensure that all findings from the Register are derstandable formats. This includes writing lay-friendly news stories and blog posts, creating infographics summarising core data trends, and producing visual content such as videos, animations, and interactive graphics optimised for social media and newsletters. Where appropriate, we will issue press releases highlighting high-impact publications or milestone developments, working with funders and institutional partners to coordinate media engagement.

The continued roll-out of the Register is essential to getting a clearer picture of where people with MND live, how prevalence is changing, and where to focus research and resources.

“There are still many unknowns when it comes to MND. The continued roll-out of the Register across the three nations allows us to simultaneously better allocate resources while promoting research into this life-changing illness.” said Professor Al-Chalabi.

To stay informed about the latest MND research and contribute to the ongoing efforts, follow the UK MND Research Institute on social media or sign up for our newsletter.