PRIVACY POLICY

The Australian Bone Marrow Donor Registry (The Registry) helps Australian patients in need of a blood stem cell or bone marrow transplant. When a patient cannot find a matching donor in their family, their healthcare provider looks to The Registry to find an unrelated, volunteer donor.

The Registry is a non-profit charity, accredited by the World Marrow Donor Association. We match Australian patients with unrelated donors (or donated umbilical cord blood) in Australia and around the world. We are also part of a global network of registries who can search our registry for Australian donors on behalf of patients from their country.

To do our life-saving work, we ask donors and patients to consent to us collecting, holding, using and disclosing their personal information. We collect information directly from donors, or through third parties that we have a relationship with (e.g. ABMDR-accredited hospitals) and we may disclose this information to third parties both in Australia and overseas (e.g. accredited international registries).

We collect and use personal information to:

  • assess the eligibility of individuals to donate blood stem cells or bone marrow and to protect donor and patient health and safety, and the safety and sufficiency of Australia’s unrelated blood stem cell or bone marrow supply;
  • assist in the timely supply of blood stem cells, bone marrow or cord blood for a patient’s actual or potential future transplantation needs;
  • maintain contact with donors regarding past and potential future donations;
  • participate in registry communication, marketing and educational activities, including donor satisfaction monitoring and market research;
  • undertake internal record keeping and administrative tasks, such as risk management, education and training of staff, and quality assurance activities (including IT system testing); and
  • comply with its legal obligations.
Where health information is provided to third parties it is for clinical assessment, care and safety purposes, and is de-identified unless the subject of the information is the recipient of the care.
We also work closely with the research community, and donors can choose to consent to The Registry providing their information to ethically-approved research.

We take steps to protect the personal and sensitive information we hold from misuse, interference, loss, unauthorised access, modification or disclosure.

Site visitors

By visiting this site, ABMDR may collect the following information:

  • Additional personal information provided directly by you.
  • Visitor information through the use of our website and associated applications (including associated social media platforms).
  • Browser session and geo-location data, device and network information, statistics on page views and sessions, acquisition sources, search queries and browsing behaviour.
  • Information about access and use of this website, including through the use of internet cookies, communications with our website, type of browser used, type of operating system used and domain name of internet service provider.

This information may be used:

  • for data analytics, market research, website and business development;
  • to send individuals information about blood stem cell and bone marrow donation and ABMDR.

This data may be disclosed to third parties to collect and process data on behalf of ABMDR, such as Google Analytics. This may include parties located, or that store data, outside of Australia.