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When will the registry be up and running?
It will take at least a year for the registry to be up and running – possibly longer.
ADNeT research partners received the research grant on 1 July 2018 so now the work can begin. There is much development required to create a national database. The research to get agreement across the nation on a standard assessment of persons with memory complaints or dementia and what data we need to collect to measure quality of diagnosis and care. This will involve consultation with existing memory clinic staff, consumers and experts in memory testing, brain scans and electronic database creation and management, with appropriate attention to confidentiality and data security.
Can I register my interest now?
You can register your interest by contacting [email protected].
There will also be another public announcement when the registry is rolled out across Australia. Details about how to enrol in the registry will be available then.
Can I be involved in clinical trials now?
There are dementia trials underway across Australia. You can apply now to these trial sites to see if you are suitable for a trial that is currently recruiting participants. ADNeT will boost these trials once it is up and running.
How do I apply to be considered for clinical trials?
www.ac4r.com.au is a website that provides helpful information on some of the trials and sites running in Australia. We also have information on trials available here, including what the trial is about and who to contact in order to become involved.
The Government website – Australian Clinical Trials – has information and resources about clinical trials across a range of health conditions.
If you have not found the information you seek from the AC4R website or Dementia Australia website, you will need to contact your regional major hospitals and ask if they are running trials for dementia prevention and treatment and get the contact details for the local co-ordinator from the hospital.
Who will set up the registry?
The registry will be developed by a team of dementia researchers with help from clinicians and health service providers. The Chief Investigator is Professor Christopher Rowe.
Thank you for your interest and willingness to contribute to the development of better care and treatments for this major health issue for a very large and growing number of Australians.