The MiNDAUS Registry is the name of the Australian Motor Neurone Disease Registry. The Registry is Australian, voluntary and highly secure.
Why do we need an MND Registry?
There is still a lot we don't know about MND, including its causes and why it affects people in different ways.
The MiNDAUS Registry collects health information during your normal clinic visits as well as any information you may choose to enter. By allowing us to collect your health information you will become part of the bigger picture, helping us to understand MND and to develop better treatments and improve care and services.
Through collecting data and health information from people living with MND in Australia we can:
- develop a single source of information about people with MND in Australia
- know how many people live with MND in Australia, and where they live, so that we can better support them
- improve research into better treatments, improved care, and one day a cure for MND
Who can join the Registry?
The Registry is open to all people diagnosed with MND in Australia. It is free, quick and easy to join. You can register yourself or ask your MND clinic to help register you.
By joining the MiNDAUS Registry you can also create a personal MND Health Record, which you or a carer or family member can edit, change or share at any time.
Taking part in clinical trials and research
If you agree, your information can be used to determine if you are suitable for a clinical trial or linked to approved research. The MiNDAUS Registry team may contact you about potential clinical trials, but we will never share any information that will identify you.