17 May 2018
The Australian and New Zealand (ANZ) MRDR now has over 2000 patients registered! A big thank you to everyone at the 30 participating ANZ sites for making this happen. Your time and efforts are much appreciated!
17 May 2018
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 one hospital in Korea, The Samsung Medical Center, has received ethics approval and another three 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.
Linkage with the National Death Index (NDI) was performed recently. 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 are listed in 'Outputs', with more in the pipeline on renal impairment and stem cell transplantation in MM. Presentations at key state (1), national (6) and international (3) meetings were made in 2017 on diagnostics and treatment, renal impairment, stem cell transplant, outcomes for people of Pacific Islander ethnicity, and patient-reported outcomes.
The Myeloma 1000 Project has close to 240 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 recently funded by the National Blood Authority through to 2020. It will describe the use of immunoglobulins in MM, including variation in practice. The results from this study will inform policy and clinical practice related to immunoglobulin therapy in these patients.
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 underway and Takeda and Gilead fund this study.
International Pharma collaborations
The Takeda Global Insight Registry group (USA) and Celgene Connect® MM registry group (USA) have espressed interested 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