The ASPREE study protects the privacy of participants in a number of ways:
- All participants are allocated an ID number in place of personal information such as name and address. Information we collect is entered into a de-identified database via the secure ASPREE Data Entry website.
- Access to this web-based portal is only made available to registered study staff via a password-protected and secure login.
- Data held at the ASPREE Clinical Trial Centre is locked within a secure environment both physically (paper files) and electronically.
- Data collection, storage and management is centralised at the ASPREE Clinical Trial Centre in Melbourne, allowing us to track the location of files at any time.
- All ASPREE and ASPREE-XT study staff have been trained and understand the importance of confidentiality and privacy. In addition, all staff have signed confidentiality agreements as part of their employment for the study.
Frequently asked questions about privacy
Who will have access to my data?
Only a limited number of trained personnel have access to information which may identify you, such as your name, address, and telephone number. Every staff member and contractor has signed a confidentiality agreement as a condition of their employment.
ASPREE and ASPREE-XT will never release your personal information to third parties unless ordered to do so by a court order or by law.
Can insurance companies, drug companies, employers, or my relatives find out about the results of research on my information?
No, they cannot. Your information is securely stored in a de-identified way. You have been allocated a study number which means information that can identify you, such as your name, address, or date of birth, is not recorded with your data.
Your personal information will NOT be released to any third parties unless ordered to do so by a court order or by law.
How is my health information accessed?
Participants in the ASPREE and ASPREE-XT studies provide written consent to access their health and prescribing information held by Medicare, the Pharmaceutical Benefits Scheme, and medical records held with your doctor, specialist or any hospital you may attend. This includes access to a Coroner’s report or other government health records.
Only medical information that is directly related to the study will be collected, de-identified, stored and analysed for the purposes of the research, and possibly a clinical audit undertaken by your GP.
What happens to information about me if I die while I am still a participant in the ASPREE-XT study?
We sincerely hope this doesn’t happen! In that unfortunate event, information collected during the course of the study would remain in the database, de-identified and kept for research purposes.
How long will ASPREE keep information about me?
Indefinitely. Your information will always be associated with an ID number rather than your personal details. Furthermore, any research findings will never identify any individual in the trial.
What if I decide at some point that I no longer want to be involved in ASPREE-XT?
Participation in the follow up study and sub-studies is completely voluntary. Please contact our team on 1800 728 745 (toll free from a landline) for a confidential discussion about any concerns you may have.