Registry participants, families and friends
What is the Australian Dementia Network (ADNeT) Registry?
The Australian Dementia Network (ADNeT) Registry is a clinical quality registry for individuals newly diagnosed with either dementia or mild cognitive impairment. The registry gathers and analyses health and care information to better understand what is working well and what needs to be changed to provide the best quality of clinical care and services. The registry is managed by Monash University, VIC.
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. If you are unsure about your diagnosis or treatment, please contact your treating health professional.
Do I have to participate?
Your participation in the Registry is entirely voluntary. You do not need to do anything to be included in the Registry.
If you do not wish to participate, please contact the Registry by calling 1800 314 421 (freecall) or sending an email to adnet.registry@monash.edu
Why participate in the Registry?
Your participation in the registry helps us understand what is working well and what needs to be changed to provide the best quality of clinical care and services in Australia for people with dementia and mild cognitive impairment. Participating in the Registry will assist in identifying gaps in the current services provided in Australia, and guide discussion to drive and promote its development. This information will be feedback to participating clinics, government, industry and researchers. This is how the quality of clinical care and health outcomes will be improved.
There will be no direct benefit to you from participating in this registry because the process of improving health care systems takes a long time. The data collected by ADNeT Registry is expected to benefit people diagnosed with dementia or mild cognitive impairment in the future.
Are there any risks of participating in the Registry?
There are no risks in participating in the ADNeT Registry. Your decision about participating in the ADNeT Registry will not change the clinical care you receive. You will continue to receive the standard medical care; we simply record what happens to you.
What does participation involve?
You do not need to do anything to be included in the ADNeT Registry.
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. Participation in these surveys is voluntary. You can call us on 1800 314 421 if you do not wish to receive any surveys.
- 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. All research studies will be reviewed and approved by the ADNeT Registry Steering Committee.
How is the Registry data stored and protected?
We care about your privacy. All information collected is stored securely and treated confidentially. Your privacy is protected by our compliance with Australian privacy legislation and guidelines.
How is Registry data used?
Registry data is used to produce reports, papers and presentations for participating clinics, government, industry, and researchers. This is how the quality of clinical care and health outcomes will be improved. You will never be identified in any reports, papers, or presentations.
To help the Registry better understand long-term health outcomes and service use, we will use a secure system to link your registry information to data routinely collected by various government bodies in relation to your health and use of government health and related services, such as Medicare, hospital and aged care information. Any linked data is stored in an anonymised form within a secure environment.
What sort of approval do you have to collect my information?
This study is approved by the Alfred Health Human Research Ethics Committee (HREC) under the National Mutual Acceptance Scheme (Project Number: 44037, Approval date: 27/08/2018). Approval is also obtained for all participating clinics.
How can I access my information?
You may apply to access your information at any time by contacting the Registry Coordinator via email (adnet.registry@monash.edu) or by phone (1800 314 421). For reasons of privacy and patient confidentiality, all requests must be compliant with the ADNeT Data Access and Publication Policy.
For more information please contact the Registry:
Free call: 1800 314 421
Email: adnet.registry@monash.edu