Data Collection

The database currently holds records on over 31,000 transplants from 52 centres (not all active). After patients are registered they continue to be monitored for relapse of disease or other complications, and patients may have more than one transplant. Confidentiality is very important. The Registry database does not store full patient names or addresses, and no identifying information is ever shared or presented. Most data are entered directly into the online database by staff at the transplant hospital.

 

Data Uses

Clinical

Collaboration and interaction between transplant units has led to a greater understanding of causes of death, a decrease in transplant related mortality and incremental improvements in outcomes. Treatment decisions may be guided and supported by registry data.

Safety and quality

The ABMTRR is able to provide comparative analyses to assist BMT programs with internal quality assurance processes. Many hospitals now have their BMT services accredited by external bodies, such as the Foundation for the Accreditation of Cellular Therapy (FACT), and Joint Accreditation Committee-ISCT (Europe) & EBMT (JACIE). Benchmarking against national figures is required for outcomes such as overall survival, engraftment and graft vs host disease in order to achieve accreditation.

Annual data summary

This document is distributed free of charge to all contributing clinicians and government agencies, and at a cost to corporate entities such as pharmaceutical and biotech companies. It provides information on the current trends and outcomes for transplants performed in Australia and New Zealand, including the patient demographics and their diseases.

Unrelated donor collection

The unrelated donor collection was subsidised by the Australian Bone Marrow Donor Registry (ABMDR) at the Red Cross from 2001-2014. Separate reports are produced for unrelated donor transplants in Australia and cord blood transplants. It is important to monitor these trends and outcomes because of the higher costs involved with these types of transplants and the increasing numbers being performed.

Research

The ABMTRR database is often used as a basis for more detailed studies, or to ascertain the feasibility of such studies. A database study module has been developed as an enhancement to the online system, made possible by a grant from the Arrow Bone Marrow Transplant Foundation. This enables better collaboration for both prospective and retrospective projects.

Publications and presentations

Registry data are regularly used in presentations at conferences and publications in peer reviewed journals. The ABMTRR also presents at stakeholder meetings to discuss current BMT data and analysis issues.

Administrative purposes

The ABMTRR is able to provide historical time series to be used for projections of future resource planning for BMT such as equipment and staffing requirements for BMT units and laboratories. For example, planning for BMT enhancement programs in NSW over the next 5 years has been based on ABMTRR figures.

Ad hoc requests

On average the ABMTRR receives around 10-15 ad hoc data requests each month. These include researchers requiring information on the numbers of particular transplant types or diseases, hospitals needing analysis of their own figures or comparisons with the whole database, government departments requiring figures for planning purposes, or clinicians seeking information on patients with specific indications.

For further information please see the Future Research and Annual Data Summary sections of this website, or Contact Us.

UpdateThe 2015 Annual Data Summary is now available