The National Blood Cancer Registry (NBCR) began in 2012 as an AML registry under the leadership of Associate Professor Andrew Wei. Part of the ALLG’s strategy for ‘better treatment, better lives’ was to create a registry detailing the clinical pathways of patients suffering from blood cancer.
The NBCR was designed to give real world data linking demographic, cancer cytogenetic, clinical and treatment outcome information and offers a longitudinal clinical pathway for each participating patient.
The NBCR fills current gaps in knowledge and research capacity to form a collaborative model framework. The framework is equipped to develop evidenced-based policy and improve the diagnosis, treatment and outcomes for patients with blood cancers including Acute Myeloid Leukaemia (AML), Acute Lymphoblastic Leukaemia (ALL), Myelodysplasia (MDS), Chronic Lymphocytic Leukaemia (CLL), Chronic Myeloid Leukaemia (CML),and Uncommon Lymphomas.
By systematically collecting patient information, the NBCR provides serial longitudinal data for blood cancer patients throughout Australia and New Zealand.
The NBCR has captured data from more than 5,000 patients in 43 participating hospitals in Australia, five active hospital sites in New Zealand, and one in Taiwan, becoming the principal source of longitudinal leukaemia and clinical pathway data for Australian and New Zealand researchers.
Since the start of the NBCR in 2012 a key challenge is its financial viability and the ALLG is constantly seeking new partners to help support this critical piece of real-world data infrastructure.
Premium quality data
Our members volunteer to be medical monitors for all data listed on the registry. Their role is to ensure the quality of data is accurate to the World Health Organisation standards. For the classification of AML, the medical monitors review cytogenetics, molecular genetics and blood and bone marrow results for each patient listed on the registry.
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Data and patient tissue samples that are collected through the NBCR are what’s needed to accelerate blood cancer research and are the only way to progress better treatment options for patients to live longer and better-quality lives.
ALLG Member, Acute Leukaemia Scientific Working Group Chair & NBCR Ambassador
NBCR in Numbers
New for 2026
The burden of chronic leukaemias on the Australian community and health care system due to increasing incidence has increased substantially over the past 20 years. The capture, monitoring and reporting of real-world data in these diseases is pivotal to development of cost-effective treatment and improved care for patients.
ALLG is excited to announce that in 2026 the well-established framework of the NBCR will be expanded to include additional data modules for the longitudinal real-world clinical data capture of patients with both chronic lymphocytic leukaemia (CLL) and chronic myeloid leukaemia (CML), to drive better treatments and better lives for patients with these diseases. This new initiative aims to help the community, clinicians, and policy makers to:
- Understand the risk factors and causes of CLL and CML
- Improve treatments to help CLL and CML patients live healthier, longer lives
- Provide insights to help personalize care
- Discover ways to predict or reverse disease changes
Support the NBCR
This vital program receives no ongoing funding and relies on our partners and community to continue providing excellent services to patients and clinical researchers alike. Donate now to support ALLG’s NBCR to continue providing excellent services to patients and clinical researchers alike.
For more information about the program and how to support Australasia’s leading blood cancer clinical database, download the PDF below:
For enquiries about the NBCR and Biobank and how you can take part in this groundbreaking effort to shape the future of blood cancer research, please contact:
Karin Dunne
ALLG NBCR and Biobank Coordinator
+61 3 8373 9725
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