MiNDAUS: The Australian MND Registry

People living with MND can join the Registry through their participating  MND clinics or sign up directly through the registry website.

When joining the Registry, you will create a login that allows you to add and update information at any time. You can also choose to share your information with others, if you wish, such as your healthcare providers.

You can also invite your carer or family member to enter and update your details and share them on your behalf. To enable this, log in to the Registry, click your name in the top right-hand corner, then select ‘Principal Caregiver management’.

Two step-by-step guides are available to help you register and navigate the Registry:

• MiNDAUS User Guide Part One (registration and first steps)

• MiNDAUS User Guide Part Two (completing the patient sections)

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

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

The MiNDAUS framework and governance for privacy, data collection, storage and management of data access requests have been ethically reviewed by the Monash Health Human Research Ethics Committee and approved. The approval number is RES-21-0000-058A.

The MiNDAUS Registry is committed to excellence across all our sites. The following documents are available to download below:

• MiNDAUS Clinical and Patient Registry Framework

• Participant Information Sheet and Consent Form

• MiNDAUS Privacy Policy

• Standard Operating Procedure Informed Consent

• Patient User Guide (part 1)

• Patient User Guide (part 2)

Standard operating procedures for personnel at participating sites include a Clinical Site Master Resource Document, Clinic Admin Training, and Data Entry and Query Resolution. To request the current versions of these documents, please email [email protected]

External researchers seeking access to registry data must obtain approval from the MiNDAUS Registry Governance Committee and meet the committee's requirements for the ethical use of the data and the protection of patient privacy.

A list of the modules and data variables available in the Registry is listed here.

Application requests for de-identified data require:

• Submission of a research proposal to the Governance Committee; and

• Demonstration of evidence of ethical clearance to conduct the research from an independent ethical review board.

To submit an application email a completed Data Request Form to [email protected]

External researchers wishing to conduct clinical trials or other studies which require access to identifiable information will not be able to contact registry participants directly. Once they have been granted approval from the registry governance committee, the registry team will contact eligible members of the registry on behalf of the third-party researchers. Interested registry participants will then contact the third-party researchers directly in order to decide whether they wish to participate.