ALLG’s National Blood Cancer Registry Surpasses 2000 Participants
The ALLG’s National Blood Cancer Registry (NBCR) has had a wonderful year so far despite the challenges of COVID-19. The NBCR has now topped 2,000 registered participants, cementing its position as ANZ’s largest collection of real-world data of acute myeloid leukaemia (AML), acute lymphoblastic leukaemia (ALL) and several uncommon lymphomas.
This milestone signifies the ALLG’s commitment to providing a platform for real-world data collection and the importance of informing clinical practice with evidence-based patient experience with blood cancer.
Since 2012, the NBCR has been capturing the real-world experience, including treatment pathways, for patients across Australia. The registry is a large clinical database that can help clinician and scientists determine trends in current clinical practice in Australia for those living with AML, ALL and uncommon lymphomas and help provide the evidence base for future treatment pathways, for Australians and patients around the world.
In 2019 the NBCR contributed to an international publication in the Journal of Clinical Oncology of nine international registries regarding specific genetic changes and prognosis in patients with AML (Angenendt et al. J Clin Oncol. 2019 Aug 20: JCO1900416). Co-authored by NBCR Ambassador and ALLG Scientific Advisory Committee member, A/Prof Andrew Wei, this collaborative effort looked retrospectively at various international registry data – including the NBCR – to determine how the presence of a specific genetic abnormality, NPM1, relates to clinical outcomes in those with AML. Drs Ing-Soo Tiong and Meaghan Wall have been major contributors to the medical and cytogenetic curation of the data for the NBCR, and their work led to this successful international collaboration. The results are significant because they allow a more advanced look into a patient’s genetic risk profile and which treatments may be most effective.
A key factor in the long-term success of the NBCR is the people involved. First and foremost, the involvement of the 2,018 participants in the NBCR so far and more in future is essential, and we sincerely thank them for their contributions to blood cancer care over the past eight years. Secondly, the commitment of the clinicians and research teams at 38 sites – hospitals, clinics and cancer centres – across Australia that are actively engaging with patients about the NBCR is truly exceptional.
The NBCR also serves as a platform for multiple clinical trials and laboratory studies that help clinicians and scientists develop new treatment pathways and understand the complexities of AML, ALL and uncommon lymphomas. Clinical trials associated with the NBCR have been ramping up over several years, and include the ALLG ALL08, ALL09, APML05, AMLM21 and AMLM22 trials. The ALLG is launching several new NBCR-related trials in the coming weeks and months such as AMLM23 and AMLM24, which are international cooperative trials that will enable access to new therapies for ANZ patients. You can find out more about ALLG clinical trials on https://www.allg.org.au/clinical-trials-research/current-clinical-trials/.
NBCR Ambassador A/Prof Andrew Wei commented, “From the inception of the NBCR in 2012, we have now surpassed the milestone of 2000 participants, which is a wonderful achievement for the ALLG, its members and the many generous stakeholders who have supported our vision. The NBCR functions as a vital gateway to ALLG clinical trials and represents the single largest repository of data for Australian patients with acute leukemia and other blood cancers. The NBCR will make a vital contribution to knowledge and future advancements in the field of blood cancers.”
The ALLG holds a “Biobank” collection of NBCR-related blood and tissue samples, which are annotated to the clinical data within the registry. These annotated samples are a major focus of several correlative, laboratory-based sub-studies of the NBCR. The ALLG LS17, LS18 and LS21 sub-studies are all in progress, investigating various molecular and genetic biomarkers or potential targeted treatment pathways for ALL, AML or splenic marginal zone lymphoma (MZL), respectively. A new laboratory study, ALLG LS22, will provide deeper insight into the differential biology of lymphoma cells versus plasma cells in Waldenström Macroalbuminaemia and is now open at seven sites across Australia. LS22 is led by A/Prof A/Prof Dipti Talaulikar from Canberra Hospital, who is the NBCR Ambassador for Uncommon Lymphomas.
An exciting development is that the ALLG is actively working to expand the NBCR to New Zealand. Although this has been in the planning for over a year, the expansion is now taking shape with the governance documentation for New Zealand set to be submitted next week through Auckland Hospital as the lead site. More sites are planned for both Australia and New Zealand, which will enable even more patients to participate in the NBCR in coming years.
The ALLG acknowledges and thanks AbbVie, Astellas, Pfizer and Amgen for their ongoing support of the NBCR.
If you are a scientist and would like to access the NBCR Biobank samples for your research, or for any NBCR-related queries, please contact Jeanette Raleigh on Jeanette.Raleigh@allg.org.au.
If you are a patient living with blood cancer and would like to know more about the NBCR or related clinical trials or sub-studies, please speak with your treating physician or visit https://www.allg.org.au/clinical-trials-research/national-blood-cancer-registry/.