Registries, Networks and Research Data
The activities supported by the Foundation in this area are closely related to
the work of the St Vincent's Bone Marrow Transplant Clinical Research Unit.
The St Vincent's Bone Marrow Transplant Clinical Research Unit was formed in
1981. Currently based in Leichhardt St Darlinghurst, the Unit has collected
data and participated in medical research for more than 20 years.
The Clinical Research Unit carries out the following major tasks:
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Data collection, recording and analysis of detailed records for transplants
carried out at St Vincent's Hospital.
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Correspondence with the International Bone Marrow Transplant Registry based in
Milwaukee, Wisconsin, USA.
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Maintenance of the Australasian Bone Marrow Transplant Recipient Registry
(ABMTRR) which collects records of transplants carried out across Australia and
New Zealand.
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Analysis and reporting from the ABMTRR including Annual Data Summaries and
retrospective studies on particular research topics.
The BMT Clinical Research Unit has been involved in pioneering medical research
since its inception. Major research achievements include:
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Participation in many pioneering clinical trials and analytical studies since
the 1980s. These studies led to significant reduction in transplant-related
mortality due to infection, graft-versus-host disease, veno-occlusive disease,
interstitial pneumonitis and other life-threatening complications, by the
introduction of new prophylaxes and treatments. The staff of the Unit have
presented published many papers at international conferences and in
peer-reviewed international medical journals.
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Development and maintenance of the Australasian Bone Marrow Transplant
Recipient Registry (ABMTRR). This database is now a powerful management and
research resource used by clinical professionals all over Australia and New
Zealand. The Unit has published an Annual Data Summary from the ABMTRR every
year since 1995. Several retrospective studies using ABMTRR data have been
completed or are in progress.
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Collection of more detailed data on unrelated donor transplants on behalf of
the Australian Bone Marrow Donor Registry (ABMDR). This collection was started
in 2001 and collects detailed information on HLA-match, transplant type and
outcome for transplants involving volunteer unrelated donors. It is planned
that this data will be forwarded to an international database to contribute to
a worldwide effort to improve the safety of unrelated donor transplants.
