Australian myeloma registry highlights challenges of adhering to best practice

This article was originally published on TheLimbic

Australian experts have been ‘startled’ to discover that many patients with multiple myeloma do not receive recommended imaging and staging, sparking concerns about missed diagnoses and overtreatment of benign forms of the disease.

The findings come from an analysis of real-world data of more than 2400 newly diagnosed patients enrolled in the Myeloma and Related Diseases Registry (MRDR) from 44 sites across Australia and New Zealand.

The analysis published in Clinical Lymphoma, Myeloma & Leukemia, covering eight years of registry data, has highlighted a ‘huge shortfall’ in diagnostic workup, says Professor Andrew Spencer, Head of the Malignant Haematology and Stem Cell Transplantation Service at The Alfred Hospital and MRDR committee member.

“The registry was set up for a number of reasons, part of which was to get more accurate data about survival outcomes in MM across Australia because the available data looked to be woefully inaccurate,” Professor Spencer told the limbic.

This was due at least in part to people with more benign conditions, such as smouldering myeloma, being labelled as having myeloma, he said.

“There are relatively benign disorders that can look the same when you do a bone biopsy so there’s difficulty around getting the right diagnosis so that was one of the drivers of setting up the registry as well as to enable us to benchmark outcomes and look at how care is being delivered.”

Overall, survival outcomes for MM patients with data in the MRDR (PFS 30.8 months and OS 65.8 months) compared favourably to other recently published real-world populations across Europe, Asia and the US.

According to MRDR,  patients not receiving an ASCT had a PFS and OS of 30 months and 68.9 months, respectively. These survival outcomes were superior to those reported in the pivotal FIRST trial.

Those data were particularly significant, said Professor Spencer, because continuous lenalidomide had only been available in Australia as first line treatment for transplant-ineligible NDMM since February 2017 and was still not accessible in New Zealand. This meant a significant proportion of these MRDR patients were treated with a fixed duration of bortezomib-based first line.

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