The Australian and New Zealand (ANZ) MRDR now has close to 2500 patients registered! A big thank you to everyone at the 35 participating 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 close to 290 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. Korea will be the pilot phase in this process, then Singapore, Hong Kong and Taiwan. Currently two hospitals in Korea, have received ethics approval and another two sites have applications in progress. The APAC MRDR steering committee is being formed, the protocol has been developed, and the preparation for the setup of sites has commenced. We look forward to 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.
Collaborations with sister registries in Austria (comparing diagnostics, access to care and first-line treatment) and Korea (comparing bortezomib-based versus thalidomide-based first-line chemotherapy) are ongoing.
Our second linkage with the National Death Index (NDI) is in process and sites will be contacted with any unregistered deaths before we update this data. Mortality is a key outcome with potential for loss to follow-up and linking with the NDI ensures the accuracy of this outcome. NDI linkage 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 Amgen Centre for Observational Research (USA) has requested a preliminary report of aggregate MRDR data to guide future potential collaboration.
The Australasian Myeloma Research Consortium (AMARC) uses the MRDR as a platform for early phase clinical trials and recruitment to trials is underway. The MRDR's infrastructure including data collection system and the established national network of sites, make it an attractive platform from which to cost-effectively conduct clinical trials. Other points in favor are Monash’s experience in running clinical trials, and the haematology-focused academic unit that administers the registry.
Priorities for the next 12 months
- Ongoing expansion of sites
- Data quality: Reinforce consistency in understanding of definitions, outlier identification and investigation, promote data completion
- Consolidate international registry collaborations
- Enhance Myeloma 1000 Project accrual
- Complete IMPROVE study accrual
- Set up FRAIL-M trial