The MiNDAUS Registry is the name of the Australian Motor Neurone Disease Registry. The Registry is Australian, voluntary and highly secure.
Background
The MiNDAUS Registry was initially established in 2021 by the MiNDAUS Partnership (formed in 2019 by a group of prominent MND researchers, MND clinics, neurologists and people with lived experience, through an Australian Government NHMRC grant).
“Our NHMRC MiNDAUS Partnership brings together all stakeholders in a patient centred approach that will drive care and research improvements for MND. The Partnership will be evidence based, policy-generating and focused on the needs of patients and community support. Through our partnership we will facilitate effective translation of treatment and care, with meaningful discoveries for MND patients and their carers.”
-- Professor Matthew Kiernan
National MND Data Strategy
MND Australia seeks to harness the power of data to drive meaningful change for people living with MND and targeted research towards a cure.
MND Australia has become the official custodian and operator of the MiNDAUS Registry. Custodianship of the MiNDAUS Registry is the first important step towards building a National MND Data Strategy.
While the MiNDAUS Registry is a valuable resource with data from almost 1,000 Australians with MND, it forms only one piece of a comprehensive data ecosystem. MND Australia is calling on the Australian Government for investment in an integrated data strategy that consolidates fragmented data across Australia and creates a nationally sustainable data collection and maintenance model.
Why do we need the MiNDAUS 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 MND Clinic visits as well as optional information people may choose to provide. The Registry enables individual data and health information to form part of the bigger picture, helping us to better understand MND in Australia, develop treatments and improve care services.
Through collecting data and health information from people living with MND in Australia we can:
- know how many people live with MND in Australia, and where they live, so that we can better support them
- improve care services
- accelerate research developing treatments and ultimately a cure
Who can join the Registry?
The MiNDAUS Registry is open to all people diagnosed with MND in Australia. It is free, quick and easy to join. People living with MND can register themselves or ask their MND Clinic to help with registration.
The following MND Clinics are currently participating in MiNDAUS data collection:
- ALS/MND Multidisciplinary Clinic, Brain and Nerve Research Center, NSW
- Clinica Neurology, Neuroscience Research Australia, NSW
- Fiona Stanley Hospital MND Clinic, WA
- Launceston General Hospital MND Clinic, TAS
- Macquarie Neurology Clinic, NSW
- Northern Health Progressive Neurological Disease Clinic, VIC
- Perron Institute MND Clinic, WA
- Progressive Neurology Clinic, Barwon Health, VIC
- Royal Brisbane and Women’s Hospital, Neurology Outpatient Department, QLD
- South Australian MND Multidisciplinary Clinic, SA
- Statewide Progressive Neurological Disease Clinic, Calvary Health Care Bethlehem, VIC
- Sunshine Coast University Hospital MND Clinic, QLD
Joining the MiNDAUS Registry also creates a personal MND health record, which people living with MND or their carer can edit, change or share at any time.
MiNDUAUS data can also determine if people are suitable for a clinical trial and potentially link them to approved research.