Data that the registry is able to share is completely de-identified.
Any person with an interest in the MND Registry data is able to request access to it. Accessing this data requires completion of a form. Please contact us via email, using this form. Permission will need to be granted from both the Administrator and Steering Committee who oversee the collection of this data.
Researchers wishing to access data from the MND Registry for research purposes will be required to complete this form and gain permission from both the Administrator and Steering Committee who oversee the collection of data.
Extracted data is available in a CSV or Excel format.
Further statistics and information can be found here.