Registry participants, families and friends

What is the Australian Dementia Network Registry?

The Australian Dementia Network Registry (ADNeT) is a clinical quality registry, which collects information about the diagnosis, treatment and outcomes about individuals diagnosed with either dementia or mild cognitive impairment (MCI). The registry is managed by the Registry Science Unit in the School of Public Health and Preventive Medicine at Monash University

Why have I been contacted?

You recently attended a health service that is participating in the Australian Dementia Network Registry. The health service has identified you as eligible for the participation in the Registry.

Why participate in the Registry?

By participating in the Australian Dementia Network Registry, you are contributing to the continuous improvement of the quality of clinical care and better outcomes for people diagnosed with dementia and mild cognitive impairment.

What does participation involve?

Participation in the registry is voluntary and involves the following:

  • Collection of information about you and your health

The Registry collects information about you (e.g., name, date of birth, sex) and your health (e.g., diagnosis, memory function and medical tests) from the health service you visited.

  • Surveys with you and your care partner

You and your care partners may be invited to participate in surveys about your health and experience of clinical care.

  • Invitation to participation to participate in research studies

During your health service visit/s you may have been asked about your interest in participating in future research studies. If you have indicated that you are interested, you may be contacted with information about research opportunities.

 Do I have to participate?

Participation in the Registry is voluntary. The Registry uses an ‘opt-out’ approach to consent, meaning that if your health service is contributing to the Registry, you will be automatically be included in the Registry unless you advise us that you do not want to participate.

If you wish to be included in the Registry you do not need to do anything.

If you do not wish to be included in any aspect of the Registry please contact the Registry (freecall/email).

If you decide to participate, and later change your mind, you are able to be excluded from the registry at any time by contacting us.

Your participation decision will not affect the clinical care you receive.

How is the Registry data stored and protected?

Information collected for the Registry will be securely stored within an electronic database which is managed by Monash University. All data will be protected in line with State, Territory and Commonwealth laws.

 How is Registry data used?

Registry data will be used in a public Annual Report or reports for participating health services, government and industry to help understand the quality of clinical care and outcomes for people with dementia and mild cognitive impairment. The information will be reported in such a way that no individual is identified.

For more information please contact the Registry by

Free call: 1800 314 421  Email: adnet.registry@monash.edu