Motor neurone disease research receives major boost through new data catalyst initiative

Research into the life-shortening neurological condition motor neurone disease (MND) will receive a major boost through the formation of a new data catalyst led by Health Data Research UK (HDR UK) and Dementia Platforms UK (DPUK).

MND is a devastating disease affecting the motor neurons in the brain and spinal cord, leading to progressive muscle weakness and paralysis. Despite decades of research, several scientific challenges continue to impede the development of effective therapies for the thousands of people living with MND in the UK.

The MND Research Data Catalyst is a new initiative led by HDR UK and DPUK, with the UK Dementia Research Institute (UK DRI) and in partnership with the MND research community, to accelerate the discovery of new diagnostics, treatments and support better care for MND patients. This will be achieved by harnessing the UK’s trustworthy, large-scale health data infrastructure and fostering collaborative partnerships across the MND research landscape

Dr Rhoswyn Walker, Director of Strategy at HDR UK, said: “MND research faces many complex scientific challenges and there is a huge opportunity to accelerate research into this life-shortening disease by unlocking the power of health data. We are delighted to partner with DPUK, UK DRI and the whole MND research community to build a secure data platform that accelerates trustworthy data use to save lives.”

Professor John Gallacher, Director of DPUK, said: “DPUK is delighted to add to our growing MND portfolio by supporting the MND Research Data Catalyst. We expect the Catalyst will make a fundamental contribution to MND therapeutics; delivering high-quality translation science. Through our project management and SeRP-led informatics solutions, DPUK will provide the necessary infrastructure for rapid project delivery and data access.”

The catalyst is supported by £2 million in funding from the Department of Health and Social Care (DHSC), delivered through the National Institute of Health and Care Research (NIHR). This is part of wider support to grow MND research by the UK government in partnership with charities and organizations including the NIHR, UK Research and Innovation, MND Association, My Name’5 Doddie Foundation, MND Scotland, and LifeArc.

Professor Mike Lewis, NIHR Scientific Director for Innovation, said: "We are pleased to support our partners in the MND Research Data Catalyst. It represents an important next step in our ability to safely and securely open up data in this area to researchers from diverse disciplines, who can hopefully uncover new ways of understanding and treating this debilitating disease and improving the lives of everyone affected by it."

Joining forces with HDR UK, DPUK, and the MND research community to deliver the MND Research Data Catalyst will help drive real change for those affected by this devastating disease. The UK DRI, a hub of mechanistic science powered by molecular data, leads the largest UK clinical trial, MND-SMART, and we are pleased to support this new initiative that will significantly boost UK science in this critical area.”

Professor Siddharthan Chandran, Director of the UK DRI

The MND Research Data Catalyst will be underpinned by the principle of “user-centred design”. Solutions will be co-created with the UK-wide MND research community to ensure that they deliver against an unmet need and enable novel, high-impact research outcomes.