The Australasian Leukaemia and Lymphoma Group (ALLG) has conducted multi-centre collaborative clinical trials in haematological malignancies since 1973. The National Blood Cancer Registry (NBCR) constitutes a novel approach in integrating registry functions with clinical trials and was initially established in 2012 for patients with acute myeloid leukaemia (AML).
The collection of standardised baseline data, including molecular and cytogenetic testing, linked to patterns of therapy and outcome, with the goal of creating an Australia-wide dataset and to facilitate the management of overlapping and inter-related trials.
Currently, all known and suspected patients with AML at participating sites are registered and eligible patients subsequently offered trial participation. All consented patients, whether in a trial or not, are also followed at selected time-points via the Registry and their samples collected and stored at the ALLG Tissue Bank.
As of April 2014 the Registry had 239 patients from 17 participating institutions, ages ranging from 18 to >75 and including approximately 20 AML sub-types. Registry data allows audits of practice and outcomes, toxicity and efficacy. It is also a vehicle for studying prognostic risk groups, for monitoring changes in practice, for quality improvement in AML and the development of new trials. Future plans include on-line data entry and extension to all 75 ALLG sites.
Following its initial success, the ALLG is currently developing plans to extend the Registry to all blood cancer diagnoses linked to a suite of ALLG trials. The data and samples in the Registry will provide a valuable resource for researchers, such as investigating areas of unmet need and particular populations, or issues such as relapse rates and outcomes for particular treatments. It will also act as a common pathway into trials, and consolidate the leading role of the ALLG in clinical research in haematological malignancies.