Summary of Survey Results

The NBCR began in 2012 as an AML registry under the leadership of Associate Professor Andrew Wei. It has since grown to encompass additional types of blood cancers and has been renamed the National Blood Cancer Registry (NBCR). The NBCR continues to expand to include the variety of blood cancer types that are encompassed by the ALLG.

The intention is to gradually build capacity of the registry activities to encompass all blood cancers over the course of the next 5–7 years. In December 2016 the NBCR expanded to include Acute Lymphoblastic Leukaemia (ALL). Sites can now register patients with ALL, collecting data via the NBCR with the option to send samples to the ALLG Biobank.

The NBCR now collects data and matched samples for the following types of patients:

  • Acute Myeloid Leukaemia (AML)
  • Acute Lymphoblastic Leukaemia (ALL)
  • Uncommon Lymphomas
  • Extranodal marginal zone B-cell lymphoma of mucosa-associated lymphoid tissue (MALT lymphoma)
  • Splenic marginal zone lymphoma
  • Nodal marginal zone B-cell lymphoma
  • Lymphoplasmacytic lymphoma / Waldenström macroglobulinemia

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.

The NBCR has now transitioned to an electronic platform which facilitates quality data entry. This new platform also allows sites to utilise their own data for internal monitoring and local reporting.

The Registry Management Committee (RMC) continues to oversee the NBCR and ensure it meets the national requirements for the conduct of good, safe, ethically approved registries. The RMC, a reporting committee of the ALLG Scientific Advisory Committee (SAC), oversights the governance and operational matters associated with the registry.

During 2016 a medical monitor role was implemented to provide quality oversight and confirmation of WHO classification to AML data. We thank Doctors Ashish Bajel, James Gray, Akash Kalro and Ing Soo Tiong for offering their expertise to the medical monitor role.

At the end of 2016 there were 29 member sites activated on the NBCR. The NBCR will continue to expand in 2017 with a target of activating 80% of ALLG sites. This includes the addition of all New Zealand member sites that wish to participate.