FAQs for the General Public
Why have I been contacted?
You recently attended a health service that is participating in the Australian Dementia Network Registry (ADNeT Registry). The health service has identified you as eligible for the participation in the ADNeT Registry. If you are unsure about your diagnosis or treatment, please contact your treating health professional.
Do I have to participate in the ADNeT Registry?
Your participation is entirely voluntary.
If you have been contacted and would like to participate in the ADNeT Registry, you do not need to do anything to be included in the Registry.
If you do not wish to participate, please contact the ADNeT Registry via our toll free number 1800 314 421. Alternatively, you can send us an email to firstname.lastname@example.org
Why should I participate in the ADNeT Registry?
Your participation in the ADNeT 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. By participating in the Registry, you will assist us in:
- identifying gaps in the services currently provided in Australia,
- effectively providing feedback to participating clinics, government, industry and researchers, and
- guiding discussions to promote and drive improvements in the quality of clinical care and health outcomes.
The process of improving the health care systems takes a considerable amount of time and other resources. While direct gains from participating in the ADNeT Registry may seem insignificant in the short-term, the data collected by the ADNeT Registry will greatly benefit people diagnosed with dementia or mild cognitive impairment in the long run, and positively contribute to continuous dialogues with relevant decision-making bodies to improve health outcomes for those impacted by the disease.
What does participation in the ADNeT Registry 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 key aspects:
- 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 also voluntary. Please call us on 1800 314 421 if you do not wish to receive any surveys.
- Invitation 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 ADNeT 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 ADNeT 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 information stored in the Registry 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.
Does ADNeT have approval 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.
Can I access my information?
You may apply to access your information at any time by:
- emailing the Registry Coordinator at email@example.com, or
- calling our toll free number 1800 314 421.