Help to plan a programme to improve researchers’ access to MND research data
The MND Research Data Catalyst is a programme designed to improve access to data for researchers, with the hope that this will speed up discoveries in MND diagnosis, treatment, and care. The programme will help researchers find and get the best use out of relevant data, as well as exploring any challenges researchers face in accessing important data. The programme also aims to link research data with NHS records.
Breaking down barriers for researchers to access better data could help them uncover new insights faster, leading to better treatments and care for people living with MND. Connecting research and NHS data may improve understanding of how MND progresses and how healthcare impacts people with MND.
The researchers behind the MND Research Data Catalyst want to involve people living with MND and their carers in the planning of the programme, and in the development of materials for the public.
Taking Part
What does taking part involve?
People who take part will be asked to attend 3 online meetings (via Microsoft Teams), held roughly every six months between June 2025 and June 2026, with the possibility of extension. They will be asked to provide feedback during group discussions.
People who take part will also have the option of contributing to other activities, such as reviewing materials or sharing personal experiences.
Who can take part?
People living with MND, carers and family members.
The researchers are keen to recruit a diverse range of participants with broad geographic representation.
How can I take part?
If you are interested in taking part and would like to find out more, please contact Lorraine Holland, Project Manager for the MND Research Data Catalyst, at [email protected]
Study location
UK-wide
Funding
This study is funded by the National Institute for Health and Care Research (NIHR)