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 Acute Myeloid Leukaemia (AML), Acute Lymphoblastic Leukaemia (ALL) and Uncommon Lymphomas.
By systematically collecting patient information, the NBCR provides serial longitudinal data for blood cancer patients throughout Australia and New Zealand.
In 6 years, the NBCR has captured data from over 1,320 patients in 35 participating hospitals, becoming the principal source of longitudinal leukaemia and clinical pathway data for Australian 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.