The Australian and New Zealand (ANZ) MRDR now has close to 2600 patients registered! Over 700 patients joined the MRDR in 2018 - a bumper year for the registry. A big thank you to everyone at the 37 approved ANZ sites for making this happen. Your time and efforts are much appreciated!
MRDR at Blood 2018
The MRDR was well-represented at Blood 2018 in Brisbane, the key haematology meeting in Australia and New Zealand. The registry's breakfast meeting included a review of MRDR data and project updates and was well-attended by clinicians, industry partners and other stakeholders. The registry had additional presence at Monash University’s Transfusion Research Unit booth in the exhibition area, which generated many visits and allowed us to profile MRDR research. The registry provided data for 4 oral and 1 poster presentations at Blood:
- Predictors of early mortality in multiple myeloma: Results from the ANZ MRDR
- Upfront autologous stem cell transplantation in newly diagnosed multiple myeloma: a report from the MRDR
- The myeloma landscape in Australia and New Zealand
- 18F-FDG-PET/CT in multiple myeloma reveals additional myelomatous lesions and changes clinical management
- Health-related quality of life at diagnosis in multiple myeloma: EQ-5D-5L results from the Myeloma and Related Diseases Registry and comparison with an Australian population norm (poster)
The Myeloma 1000 Project has over 300 patients enrolled and is the only prospective fully annotated ‘liquid biopsy’ biobank in the world. This study leverages the MRDR database to link biological data with clinical data to better predict treatment response and identify patients at risk of developing MM or disease progression. It involves recruitment of 1000 MM and 1000 MGUS patients pre-treatment. There is a once-only blood collection after consent and sites receive a $150 per patient payment. We are expanding site participation so let us know if you'd like to join us!
IMPROVE (Immunoglobulins in myeloma patients: research into outcomes, variation in practice and epidemiology) is a study funded by the National Blood Authority, and offers a $300 per patient payment for information on infection and immunoglobulin use in patients with MM with a diagnosis from 1 January 2018 up to early 2019. The target population is 300 patients across all Australian MRDR sites. This study will describe the use of immunoglobulins in MM, including variation in practice, and results will inform policy and clinical practice related to immunoglobulin therapy in these patients. IMPROVE is an amendment to the MRDR and no further ethics or governance approval is required to participate.
My-PROMPT is a multicentre pilot randomised trial to test the feasibility of real-time reporting of patient-reported outcomes to clinicians treating patients with MM to improve care. It targets newly diagnosed patients within 7 days of starting first treatment. Recruitment is complete and we are in the follow-up phase. Takeda and Gilead fund this study.
The MRDR has received funding from Janssen to expand the registry to the Asia-Pacific (APAC) region. Recruitment has commenced in Korea and Singapore, with Taiwan and Hong Kong to follow. The APAC MRDR steering committee has been formed and meetings have commenced. We are excited about this collaboration with our colleagues in the Asia-Pacific region and the opportunity to compare patient characteristics, treatment and outcomes between the cohorts from each country.
Our second linkage with the Australian National Death Index has occurred and unregistered deaths will be updated. The second New Zealand mortality data linkage will be mid 2019. Mortality is a key outcome with potential for loss to follow-up and linking with national death registers in both countries ensures the accuracy of this outcome. This is one of the data quality measures being implemented by the MRDR.
Publications & presentations
Publications and presentations are listed in 'Outputs', with more in the pipeline on renal impairment coming up.
International Pharma collaborations
The Takeda global INSIGHT-MM registry group (USA) and Celgene Connect® MM registry group (USA) have expressed interest in collaborating with the MRDR.
The MRDR infrastructure and established national network of sites enhances the capacity of the Australasian Myeloma Research Consortium (AMARC) to effectively conduct early phase clinical trials. Recruitment to several trials is underway including FRAIL-M, a stratified randomised controlled trial to identify which competing treatment options are more appropriate in transplant-ineligible myeloma patients according to frailty status.
Priorities for the next 12 months