News

MND Australia new custodian of MiNDAUS Registry

Published: 14 August 2025

MND Australia has made a significant step forward in our push for a National MND Data Strategy, becoming the data custodian and operator of the MiNDAUS Registry — Australia’s Motor Neurone Disease Registry.

Our vision for the MiNDAUS Registry is that every person living with MND in Australia is included in the Registry — giving us the most complete picture ever of the MND landscape in this country.

A key recommendation from our recent economic and social impact report Every Moment Matters, identified the creation of a National Data Strategy as a critical next step to support MND research and care in Australia.

While the registry is a vital piece of a data strategy, we remain committed to advocating for Australian Government investment in a truly comprehensive National MND Data Strategy — one that unites fragmented data sources, ensures long-term sustainability, and drives better outcomes for all.

By harnessing the power of collective data, we can accelerate research breakthroughs and deliver improved care and support services for everyone impacted by MND.

Learn more about the MiNDAUS Registry