StepUp for Research is a service through which people register their interest in volunteering in dementia and/or ageing-related research, via StepUp for Dementia Research and StepUp for Ageing Research websites. The service matches registered volunteers to approved research studies based on a volunteer’s personal and health information. StepUp for Dementia Research was initially funded by the Australian Government Department of Health involving the University of Sydney (“the University”), and the University of Exeter in the United Kingdom.
StepUp for Research will only be available to research studies that have received ethics approval by a Human Research Ethics Committee registered with the Australian Government National Health and Medical Research Council. View the NHMRC Guidelines here.
Volunteers can register through the StepUp for Dementia Research or StepUp for Ageing Research website (“the Website”), the StepUp for Research helpdesk (“the Helpdesk”) and on paper-based registration forms. Volunteers can self-register or they can be registered via a proxy. The University manages the Website and the Helpdesk.
This privacy collection notice serves to inform volunteers and proxies as to how the University uses and discloses their personal information.
The University collects personal information:
Information collected through StepUp for Research is stored as identifiable data while a volunteer/proxy maintains an active account. For withdrawn accounts, data will be retained in a non-identifiable format to be used for data analytics and no identifiable data will be retained.
Where a volunteer/proxy does not supply all the requested information, the University may be unable to register the volunteer to participate in StepUp for Research, process a request or manage the volunteer’s participation in StepUp for Research.
The University collect’s personal information directly from the volunteer/proxy. We may also collect information about the volunteer from a proxy. Where a volunteer is registered by a proxy, personal information is collected about the volunteer from the proxy. An indirect collection of personal information is only done with either the express consent of the volunteer or in accordance with the law.
When a volunteer registers to participate in StepUp for Research, the University collects the following personal and sensitive information:
Where a volunteer is registered by a proxy, the University collects the personal information of the proxy, namely, their contact details and the nature of their relationship with the volunteer. Where the proxy is acting as the authorised representative of the volunteer, the University also collects supporting documentation relating to this authorisation.
The University only collects sensitive information about the volunteer with the volunteer/authorised representative’s consent unless it is otherwise required or permitted by law to do so. The sensitive information collected by the University is information about the volunteer’s health.
As part of the registration process, a volunteer/proxy is asked to consent to the University disclosing their personal information to personnel from organisations that conduct research (such as, universities, research institutes, companies) for approved research studies so that the volunteer may be recruited to that study. When StepUp for Research matches a volunteer to a research study, the personal information of the volunteer/proxy is disclosed to the personnel conducting the study.
When a volunteer/proxy uses the Helpdesk, the University collects their username, their full name and the answers in relation to the security questions set up by the volunteer/proxy at registration.
When a volunteer/proxy is browsing the Website and wishes to access a secure area of the Website, the University collects their username and password.
The Website is hosted on the cloud-based Microsoft Azure platform. The servers are located within Australia.
The University may collect a volunteer/proxy’s personal information when they browse or otherwise use the Website.
Examples of information that the University collects includes
The University collects information through such mechanisms as server logs, proxy logs, web beacons and cookies.
A cookie is a package of data which a website requests be stored temporarily on a user’s computer (or in memory) to identify them as a visitor to that website. Cookies may also store the following information: session (numbered key) and duration. A numbered key is a unique server-generated number used to identify the current session.
The information collected by the University is used to help improve the Website’s content and performance. When a volunteer/proxy visits the secure area on the Website cookies are used for security and personalisation purposes.
A volunteer/proxy can choose to disallow cookies by changing settings on their web browser. However, disabling all cookies may affect their ability to access the secure areas of the Website.
The University will only use or disclose your personal information
Examples of how the University will use and disclose the personal information of volunteers/proxies include
The University may disclose the personal information of volunteers to the Australian Government Department of Health in accordance with the terms of the funding agreement between the University of Sydney and the Department. Where such a disclosure is made, it will only be done on the basis that the personal information is used for the purposes of collection previously detailed in this statement.
Volunteers/proxies wishing to access or amend their personal information can log-in to your account online here, or contact the Helpdesk on 1800 – 7837 – 123 (weekdays between 9am and 5pm) or email us at stepup.research@sydney.edu.au.
For information about StepUp for Research complaints process, see this page, or contact the helpdesk on 1800 – 7837 – 123 (weekdays between 9am and 5pm) or stepup.research@sydney.edu.au.
Both StepUp for Dementia Research and StepUp for Ageing Research websites (“the website”) are managed by the University of Sydney (“the University”) and hosted on the cloud based Microsoft Azure Platform. The servers are located within Australia.
The University may collect your personal information when you browse or otherwise use the website.
Examples of the information that the University collect include
The University collects information through such mechanisms as server logs, proxy logs, web beacons and cookies.
A cookie is a package of data which a website requests be stored temporarily on a user’s computer (or in memory) to identify them as a visitor to that website. Cookies may also store the following information: session (numbered key) and duration. A numbered key is a unique server-generated number used to identify the current session.
The information collected by the University is used to help improve the website’s content and performance. When you visit the secure area on the website cookies are used for security and personalisation purposes.
You can choose to disallow cookies by changing settings on your web browser. However, disabling all cookies may affect your ability to access the secure areas of the website.
