StepUp Privacy Collection Statement

StepUp for Dementia Research is a service through which people register their interest in volunteering in dementia and dementia-related research. The service matches registered volunteers to approved research studies based on a volunteer’s personal information. StepUp is a collaborative project, funded by the Department of Health, involving the University of Sydney (“the University”, “we”) and the University of Exeter.

StepUp for Dementia Research will only be available to research studies that have received ethics approval by a Human Research Ethics Committee registered with the Australian Government’s National Health and Medical Research Council (NHMRC). View the NHMRC Guidelines.

Volunteers can register through the StepUp for Dementia Research website (“the Website”), the StepUp for Dementia Research helpline (“the Helpline”) and, on hardcopy registration forms. Volunteers can self-register or they can be registered via a proxy. The University manages the Helpline and the Website.

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:

  • during the registration process;
  • after registration, where additional information may be needed to match a volunteer/proxy to a study;
  • as part of managing a volunteer/proxy’s participation in StepUp for Dementia Research; and
  • when accessing the Website and/or the Helpline.

StepUp for Dementia Rsearch collects 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 Dementia Research, the University collects the following personal and sensitive information:

  • their contact details,
  • the details of their diagnosis (if diagnosed),
  • the severity of their symptoms (if present); and
  • related medications that they are taking (if medicated for dementia-related diseases).

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 and supporting documentation, where the proxy is acting as an authorised representative of the volunteer.

Unless we are required or permitted by law to collect sensitive information about the volunteer, we will only do so by obtaining the volunteer/authorised representative’s consent. The sensitive information collected by the University is information about the volunteer’s health.

As part of the registration process, a volunteer/proxy will be asked to consent to the University disclosing their personal information to approved research studies so that the volunteer may be recruited to that study. When StepUp for Dementia Research matches a volunteer to a research study, the personal information of the volunteer/proxy will be disclosed to the study.

When a volunteer/proxy visits the StepUp for Dementia Research website, a server operated by the University makes a record of their visit and logs the following information:

  • their IP address;
  • the date and time of the visit to the website;
  • the webpages visited and the documents downloaded;
  • the type of browser being used; and
  • the username entered if accessing a restricted are of the Website.

When a volunteer/proxy uses the Helpline, the University will collect their username or personal information (i.e., full name) and challenge question/answer.

Where a volunteer/proxy does not supply all the requested information, the University will be unable to register the volunteer to participate in StepUp for Dementia Research.

Use and Disclosure

We will only use or disclose your personal information:

  • for the purpose for which it was collected;
  • for a directly related purpose;
  • when we have the appropriate consent to do so; or
  • as otherwise required, permitted or authorised by law.

Examples of how the University will use and disclose the personal information of volunteers/proxies include:

  • registering volunteers to participate in StepUp for Dementia Research;
  • managing a volunteer’s registration;
  • liaising with a proxy in order to register a volunteer to participate in StepUp for Dementia Research and manage the volunteer’s registration;
  • updating volunteers and proxies about news and details relevant to StepUp for Dementia Research;
  • matching volunteers with dementia research studies; and
  • disclosing volunteer/proxy personal information to approved studies.

The University may disclose the personal information of volunteers to the Australian Government’s Department of Health in accordance with the terms of the funding agreement between the University of Sydney and the Department.

The University does not, and does not presently intend to, disclose or transfer any personal information to overseas recipients. If at some point in the future this position changes, we will take reasonable steps to notify volunteers/proxies.

Access, correction & complaints

To access or amend your information log-in to your account online here, or contact the Helpline on 1800 – 7837 – 123 (weekdays between 9am and 5pm) or email us at

For information about StepUp for Dementia Research complaints process, see this page, or contact the helpline on 1800 – 7837 – 123 (weekdays between 9am and 5pm) or

Cookie Policy

The StepUp to Dementia Research Australia website (“this site”) is managed by the University of Sydney (“the University”, “we”, “us”) and hosted on the cloud based Microsoft Azure Platform. The servers are located within Australia.

We may collect information about your visit when you browse or otherwise use this site.

Examples of the information that we collect include:

  • the server and IP (Internet Protocol) address of the machine that has accessed the website
  • the dates and times of each visit to the website
  • the pages accessed and documents downloaded
  • the type of browser used; and
  • sometimes, the previous site visited.

The various mechanisms used by the University to collect your information include 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 that we collect is used to assist us to improve the content and performance of this site. When you visit the secure area on the site we use cookies 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 this site.