Improving the data collected by MND registries

Help to plan a study to make MND databases more consistent 

Understanding MND relies on collecting and analysing large amounts of data. This data can be stored in various registries and databases. The researchers investigated 75 different registries around the world, and found that they were all collecting different types of information. This makes it hard for researchers to compare and combine information from different registries. The researchers want to improve this by developing a ‘minimum data set’. The minimum data set would be a core list of important information that would be collected in the same way everywhere, with the goal to make research more consistent.

The researchers would like to create an agreed upon minimum data set, involving healthcare professionals and people with and affected by MND. Before they undertake large scale meetings across the UK, they wish to run a small workshop with a group of people with and affected by MND in the Lancaster area. This workshop will help to shape the future of the project, including the set up and priorities of the study meetings, and ensure the project is built around what matters most to people with MND.