Background:
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).
Aim:
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.
Methods:
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.
Results:
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.
Conclusions:
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.