PRIVACY INFORMATION FOR HEART & LUNG TRANSPLANT
As part of routine medical care of people receiving organ
transplants, your Specialist collects information about you and
your organ donor. This information is reported to individual
transplant registers. The Australian and New Zealand Cardiothoracic
Organ Transplant Registry collects information specifically
relating to heart and lung transplant operations. This information
is used to identify factors that may influence the outcome of
transplants and improve the quality of care for patients receiving
this life giving surgery and aftercare.
1. What is the ANZCOTR?
Currently funded by the Commonwealth of Australia Department of
Health and Ageing, this Registry has collected basic information on
every Heart and Lung Transplant operation since 1984.
It is very important to have this complete historical record as
individual hospitals may not keep all of this type of information
2. What information is collected about you?
Your name, the date of your transplant, the transplant hospital
and basic information such as your age, your blood type, your
operative length of stay in hospital and your post transplant
immunosuppressive drug therapy are recorded .
Your full address, phone numbers, family contacts and insurance
details are not recorded by the Registry.
If you do not want your name provided to the Registry, please
inform your Transplant Specialist or Co-ordinator.
The name of the transplant recipient is only recorded because it
greatly reduces the risk of errors and makes the cross checking of
information simpler and easier.
Similar basic information is also obtained regarding your
3. Is personal data ever released?
No. The identity of transplant recipients is not released in any
reports, or released publicly.
4. What is this information used for?
By pooling basic transplant information from all transplant
centres over a long period of time, researchers and medical staff
are able to see trends develop that greatly increase our knowledge
of the factors that can positively influence the likely outcome of
Heart and Lung transplant procedures and after surgery therapy.
A report of the combined data is published annually and copies
are provided to every individual Heart and Lung transplant centre
in Australia and New Zealand.
The Registry has also developing a website that enables transplant
recipients and potential transplant recipients the opportunity to
view summarised Registry information online.
Please note again that no individual patient identifiable
information is ever published at any time, in any form.
5. Can you see what information ANZCOTR collects about you?
Yes – you are able to request a copy of the data that relates to
your procedure only. You are not able to access any information
about your organ donor however.
Should you have any further questions, please let your Transplant
Specialist or Coordinator.