Data access for researchers

Who do we share de-identified data with?

We share data in the MND Register that cannot be used to identify peopler with researchers and other third parties.

People interested in using the data must complete an application form and sign the data terms of use.

The data access committee, made up of the MND Register team, two research/clinical representatives and a patient representative reivew the material and agree on data release.

If you would like to access the data we collect please email the team using