MND is a devastating disease affecting the motor neurones 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.

Programme overview

The Motor Neurone Disease (MND) Research Data Catalyst is a partnership programme, jointly led by HDR UK and Dementias Platform UK (DPUK) in partnership with the UK MND research community, to convene and deliver data infrastructure and services specifically designed to accelerate MND research.

The catalyst will accelerate the discovery of new diagnostics, and treatments, and support better care for MND patients by harnessing the UK’s trustworthy, large-scale health data infrastructure and fostering collaborative partnerships across the MND research landscape.

The initiative 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).

  • Our vision is to empower researchers and innovators to accelerate the discovery of new diagnostics and treatments and to support better care for MND patients by harnessing the UK’s trustworthy, large-scale health data infrastructure and collaborative partnerships.

    The focus of the first phase of the MND Research Data Catalyst Partnership will be to assemble the data, technology, expert tools, and services that will demonstrate the potential of FAIR (Findable, Accessible, Interoperable, and Reusable) data resources to deliver impact for patients living with MND. 

  • The first phase of the MND Research Data Catalyst has 3 key objectives: 

    1. Accelerate trustworthy data access, linkage, and use of large-scale and diverse data assets, directly aligned to the needs of MND researchers and innovators, by connecting existing multi-modal data across the UK. Initially focussing on enhancing discoverability of existing MND relevant datasets, building on the DPUK data portal, in alignment with the broader UK Health Data Research Gateway.
    2. Convening the community to create a unifying research data strategy that empowers novel, ambitious, and collaborative MND research and innovation partnerships that accelerate impact for MND patients, while leaving a data foundation legacy that adds value to the wider MND research and innovation system.
    3. Streamline MND health data science by promoting partnership across the MND research data landscape and beyond – including connectivity to the UK Health Data Research Alliance – to align and converge on common standards, reducing complexity across a fragmented landscape.