Privacy Information For Heart & Lung Transplant Recipients
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 Australasian 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. Once per year, heavily de-identified information is contributed from ANZCOTR to the International Society for Heart and Lung Transplantation (ISHLT) on behalf of our Australian contributors. Historically, New Zealand has made their own data contribution separately to ISHLT.
1. What is the ANZCOTR?
Currently funded by The Australian Organ and Tissue Authority, 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 indefinitely.
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 and can only be seen by your treating facility.
Similar basic information is also obtained regarding your donor, but, like recipient information, is only published in combined de-identified statistical format.
3. Is personal data ever released?
No. The identity of transplant recipients is not released in any reports, or released publicly. All data is subject to the latest privacy legislation.
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 for the previous year is published annually around June of the following year and may be accessed and downloaded via the Registry website.
The Registry website enables public access to 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.