MiNDAUS Patient Registry
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. The Registry is a clinical database that collects MND patient data, including:
- Diagnosis data
- Treatment type
- Changes in functional capacity
- Complications related to disease progression
- The impact of new treatments and interventions for MND.
Through collecting and analysing patient data, we can work towards a better understanding of MND, including its causes and pathways to new treatments.
Benefits of the Registry include:
allows patients to keep track of healthcare information related to their MND care
offers people living with MND the option of sharing data with MND researchers so they can better understand the disease and ultimately develop effective treatments
easier access to clinical trials for people with MND. The Registry database should also attract more overseas clinical trials to Australia.
Everyone diagnosed with MND in Australia is encouraged to participate in the Registry
. There are no extra tests, procedures or treatments involved.
JOIN THE REGISTRY
Please note that the MiNDAUS Patient Registry has replaced the Australian MND Registry.