Researchers: Dr Maree Farrow, Dr Elodie O’Connor and Ms Rachel Kabbani from Alzheimer’s Australia; Professor Kaarin Anstey and Dr Nicolas Cherbuin from The Australian National University.
Project Title: User experiences and perceptions of an online Alzheimer's disease risk assessment tool – the Australian National University Alzheimer’s disease risk index (ANU-ADRI).
General Outline of the Project: This project aims to evaluate user experiences of the ANU-ADRI, by asking users for their opinions on the tool and the feedback it provides about your risk of Alzheimer’s disease. We will use the findings to improve the ANU-ADRI and make it better adapted to users’ needs. Approximately 200 participants will be involved in the research project, and all data will be collected online. The results of the research will form a research report, with potential for subsequent publication in scientific journals or at conferences. You will also be given the opportunity to receive a summary report of the findings.
Participant Involvement: You are asked to complete this online questionnaire to provide your impressions of the ANU-ADRI. You will be asked about why you wanted to assess your Alzheimer’s disease risk, how satisfied you were with the ANU-ADRI and your results, and what you might do as a consequence of the information you learned. This questionnaire will take approximately 15 minutes to complete. To be eligible, you must be 18 years of age or older, reside in Australia, and be able to complete the questionnaire in English.
It is not expected that participation in this study will result in any feelings of distress or discomfort. However, if you experience any distress, please feel free to withdraw from the study immediately. Alternately, you may contact beyondblue on 1300 22 4636, the National Dementia Helpline on 1800 100 500, or see your GP for advice and support. It is important to remember that some changes in our memory and thinking abilities occur as part of normal ageing, and proper assessment is necessary in order to determine if a person has dementia.
Participation is completely voluntary, and there are no penalties for withdrawing from the study. If you decide to withdraw from the study at any time, you can do so by contacting a member of the research team, and any information you have provided will be deleted.
Confidentiality: All of the information that you provide will be kept private and confidential, as far as the law allows. Only the researchers named above will have access to the data you provide, and your information will be combined with that of other participants in the study so that you will not be able to be identified in any way in any of the research results and publications. Your contact details will be kept strictly separate from any data collected. Your email address will be used only to communicate with you about this study, and to send you a summary of the findings if you request this. It will not be used for any other purpose or provided to any third party.
Data Storage: All electronic data will be kept on a password protected laptop, and locked in secure premises. The data will be stored for five years after any publication arising from the research. After this time, the data will be destroyed.
Funding: This project is being funded by the Australian Government through the Dementia Collaborative Research Centres.
Queries and Concerns: If you have any queries or concerns about any part of this research, please contact:
Dr Maree Farrow
Telephone: (03) 9816 5795
Email: maree.farrow@anu.edu.au
Ethics Committee Clearance: The ethical aspects of this research have been approved by the ANU Human Research Ethics Committee. If you have any concerns or complaints about how this research has been conducted, please contact:
Ethics Manager
The ANU Human Research Ethics Committee
The Australian National University
Telephone: (02) 6125 3427
Email: Human.Ethics.Officer@anu.edu.