The purpose of the ALLG National Blood Cancer Registry (NBCR) is:
1. To validate and support clinical trial activity
2. To support laboratory projects (i.e. biomarker activity)
The linking of biological samples with baseline and outcome data collected together in real-time allows us to trace the patient journey through data collection and to also capture the biological events through specifically timed sample collections.
In 2017, the NBCR reached the 1,000th patient milestone.
Soon ALLG will be looking to publish:
- The recent MPN01 data under the leadership of Dr Cecily Forsyth. The Myeloproliferative Neoplasms (MPN) data and sample collection was conducted from 2014 – 2017 and has over 200 patients in the data set. The research publication will provide valuable insight to the real-world experience of MPN diagnosis, treatment, and outcomes which will overall improve our understanding of the disease.
- A cohort of the AML data under the leadership of A/Prof Andrew Wei. The AML data has been maturing over the past 2 years and now provides a unique insight to the national approach to diagnosis, treatment and outcomes of patients with AML. This information will help researchers determine new clinical trial opportunities for patients.
The ALLG extends a tremendous thank you to those who have volunteered to join the NBCR. If you wish to participate in the NBCR, please discuss with your doctor.