Date of last revision: 24 September 2018
The Asia-Pacific Myeloma and Related Diseases registry (APAC MRDR) is committed to protecting the privacy of its participants, staff and other stakeholders. All patient and stakeholder information will be handled in accordance with the Privacy Act (1988), the Australian Privacy Principles and, where applicable, laws and regulations from other countries relating to the collection, storage and dissemination of such information.
What personal data we collect and why we collect it
We collect information from participating hospitals (including patient notes and pathology records) and medical or health-related databases about patients who have a diagnosis of multiple myeloma, monoclonal gammopathy of uncertain significance (MGUS) or a related disease. Patient information is collected by participating hospitals or private practitioners, entered into a web-based database, and stored on Monash University-managed servers (Melbourne, Australia). APAC MRDR will only collect personal information about an individual that is necessary for APAC MRDR to function and only with the patient’s consent.
We use your personal information to enable us to conduct or promote research into improving the management of multiple myeloma and related diseases. Results of our research activities may be reported to the medical research community but are always presented as non-identifiable, summary data to protect the identity of research participants. Relevant Human Research Ethics Committees and/or Institutional Review Boards approve all human research undertaken by the APAC MRDR.
Communications and Events
You may provide us your name and/or other personal information to receive newsletters and other communications (both print and electronic) from time to time. We may also collect this information to assist you with your queries regarding the APAC MRDR.
We may collect contact details and other personal information, including images and videos, about our supporters and/or other stakeholders who participate in our events.
Embedded content from other websites
Articles on this site may include embedded content (e.g. videos, images, articles, etc.). Embedded content from other websites behaves in the exact same way as if the visitor has visited the other website.
Who we share your data with
The APAC MRDR will use aggregate data to produce reports and publications on multiple myeloma and its related diseases for public, government, clinical and academic audiences. These publications help inform the community about common trends in patient management and/or areas for improvement. They will never contain any identifying information about patients.
The APAC MRDR will never disclose personal information about an individual for direct marketing or to insurers. Personal information will only be shared for purposes related to the key functions of the APAC MRDR. We may share your information to the parties listed below, some of whom who may reside outside of Australia:
- Other national and international researchers or research organisations/institutions
- Government departments, agencies or bodies.
If we do this, we make sure there are arrangements in place to protect your information.
How long we retain your data
Your data will be stored securely on Monash University-managed servers located in Australia and retained indefinitely. Upon cessation of the APAC MRDR, data will be managed in accordance with the Australian Code for the Responsible Conduct of Research.
If you leave a comment, the comment and its metadata are retained indefinitely. This is so we can recognize and approve any follow-up comments automatically instead of holding them in a moderation queue.
For users that register on our website (if any), we also store the personal information they provide in their user profile. All users can see, edit, or delete their personal information at any time (except they cannot change their username). Website administrators can also see and edit that information.
What rights you have over your data
Accessing your information
For Registry Participants, you may request access to your personal information collected by the APAC MRDR. We try to make your information available within 30 days after you ask us for it. There may be some legal or regulatory reason why access is denied. If this is so, we will tell you why. Before we give you the information, we will need to confirm your identity. There is no fee to ask for your information, but sometimes we might charge an access fee to cover the time we spend finding and putting together the information you want. If there is a fee, we will let you know how much it is likely to be, so you can choose if you want to go ahead. If you would like a copy of your information, please email the APAC MRDR Project Manager (firstname.lastname@example.org).
Keeping your personal information up-to-date
We take reasonable steps to ensure that your personal information is accurate, complete, and up-to-date, however ultimately the responsibility of the accuracy and completeness of the data collected rests with the hospital or private practitioner that collects it. If you wish to amend your information, please email the APAC MRDR Project Manager (email@example.com).
How we protect your data
We take reasonable steps to protect the personal information we hold and protect it from misuse, interference and loss, and from unauthorised access, modification or disclosure. For example, your personal information is only accessible by authorised APAC MRDR personnel or authorised service providers who use the information to administer the business of the APAC MRDR. Our staff are trained in how to keep your information safe and secure.
APAC MRDR Project Manager
Phone: 1800 811 326 or +613 9903 8270