Frequently Asked Questions

Basically, our aim is to track a large group of middle-aged Australians so that we can identify which parts of brain biology, genes, psychology and behaviour (or a combination of) can help predict who will progress to a dementia later in life. We will gather lots of data from ~4,000 participants and follow them each year for at least five years (and longer if possible!)

You will be asked to participate in a series of memory and thinking tests, and to fill out surveys related to lifestyle, mood, personality, medical history and demographic information. You can do this over a period of days, whenever you can snatch some spare time! Obviously, we’d like you to do the memory tests in a quiet space, but the surveys can be done on the go on the way to work, if that’s the only time you have!

We will be using your data in a few exciting ways: the first, will be to track your progress over time in relation to your genetic data. In order to fulfil our requirements as researchers, we will be publishing our findings in scientific journals and uploading these publications to the website as we go. Our second way to use your information is to give back information on how you’re progressing in relation to the rest of the group on the website. We are all about open science here! Every time ~500 new participants get involved with the website, we’ll recompute all the averages so that you can determine where you sit in relation to the group. One thing to remember is that our website is NOT a diagnostic service, and is not intended to be used in this way. It is simply our way of giving back to you so that you feel that our work is not a “black box”, but a valuable interaction between scientist and volunteer. Without your involvement, there would be no data!

Your personal information will be kept under lock and key and deidentified. What we mean by that, is that your data will be stored on a secure server at our facility (The Florey Institute of Neurosciences and Mental Health), and all your test scores will be kept entirely separate from your identifying information (i.e. name, email and home address, phone number, etc. We have also performed encryption on your identifying information so that if there were a security breach, your information would not be traceable. We are doing everything in our power to keep your information safe, and are following Australian Medical Record Safety guidelines and are always being monitored and randomly audited by our Human Research Ethics Committees at the Royal Melbourne Hospital. For any concerns or queries, please email us directly at thehealthybrainproject@gmail.com

Dr Lim and Dr Buckley are both researchers who are employed by the Florey Institute, and who are honorary affiliated researchers with the University of Melbourne. Our research is monitored and supported by the Florey Institute, and ethically approved by the Royal Melbourne Hospital and the University of Melbourne

If you have any additional questions or concerns about your participation, please email us at thehealthybrainproject@gmail.com or call us at +61 4 7789 0908.