MiNDAUS is a partnership of Australian MND researchers, clinicians and organisations, which aims to develop a nationally co-ordinated and patient-centred approach to MND research, care and policy development.
A key component of the partnership is the MiNDAUS Patient Registry.
This national Registry is a clinical database that collects MND patient data, including:
- Demographics
- Diagnosis data
- Treatment type
- Changes in functional capacity
- Complications related to disease progression
- The impact of new treatments and interventions for MND
You can choose to use the Registry for your own purposes, or you can consent to share your clinical information with registered health professionals and researchers. Through collecting and analysing patient data, we can work towards a better understanding of MND, including its causes and pathways to new treatments.
The MiNDAUS Registry will also provide access to research for registered participants which includes the possibility of clinical trials.
You can watch an explainer video of the new registry here: MiNDAUS Registry Explainer Video
Everyone diagnosed with MND in Australia is encouraged to participate. There are no extra tests, procedures or treatments involved. Click here to register as a patient
Carer Registration - Participants can also nominate their carer to add and update their information. The carer will receive an email with a link which enables them to register.
MiNDAUS will ensure that any information you share is secure and will only be shared with someone else if you provide permission. You can read the Privacy Policy here. If you have any questions about your involvement or any feedback, please don’t hesitate to
Please note that the MiNDAUS Patient Registry has replaced the Australian MND Registry.
