The MRDR now has close to 1800 pts registered, 25 approved hospital sites and 9 sites with ethics / governance approval pending. The registry is becoming more representative of regional hospitals and the private sector and the recent approval of a multisite ethics application for the MRDR will help to streamline the process for new sites to come on board.
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. The proportion of deaths undetected in the MRDR varied between sites (see graph). NDI linkage is one of the data quality measures being implemented by the MRDR.
Linkage with the Victorian Cancer Registry (VCR) is underway.
Analyses for publication
Professor Joy Ho is presenting the results of an analysis on patients with multiple myeloma and renal impairment at HAA (the key ANZ haematology conference), looking at patient characteristics, treatment and outcomes. Dr Krystal Bergin, haematologist and PhD student with the MRDR, has performed an analysis comparing patients who receive stem cell transplants with those who don’t. These analyses are being prepared for publication.
The Myeloma 1000 project now has close to 200 patients enrolled and is the only prospective fully annotated ‘liquid biopsy’ biobank in the world. It involves recruitment of 1000 MM and 1000 MGUS patients pre-treatment. They have a one-off blood collection after consent and sites receive $100 per patient payment. This study leverages the MRDR database to link biological data with clinical data to better predict treatment response and pts at risk of developing MM or disease progression.
IMPROVE is a study recently funded by the National Blood Authority through to 2020, that aims to describe the use of immunoglobulins in myeloma patients participating in the MRDR, and to quantify the associated variation in practice. The results from this study will inform policy and clinical practice.
My-PROMPT is a multicentre pilot randomised trial to test the feasibility of real-time reporting of patient-reported outcomes to clinicians to improve care. It targets patients newly diagnosed with myeloma and within 7 days of starting first treatment. We have received funding from Takeda and Gilead to conduct the study and recruitment is underway.
Lots happening internationally!
The MRDR will receive funding from Janssen to expand the registry to the Asia-Pacific region. Korea will be the pilot phase in this process, then Singapore, Hong Kong and Taiwan. The Korean steering committee is being formed, the protocol is in development, and preparation for the setup of sites / ethics / governance processes has commenced. We look forward to this collaboration with our Asian colleagues 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.
International Pharma collaborations
The Takeda Global Insight Registry group (USA) are interested in collaborating with the MRDR once their first interim analysis is complete later this year - a meeting at ASH is planned to facilitate discussion.
The Celgene Connect® MM registry group (USA) has invited Prof Andrew Spencer (Coordinating Principal Investigator of the MRDR) to present the registry to them and discuss collaboration.
The Amgen Centre for Observational Research (USA) has requested a preliminary report from the MRDR to guide future collaboration.
The established network of sites and contacts and established CRF, make the MRDR an attractive platform from which to cost-effectively run clinical trials. Other points in favor are Monash’s experience in running clinical trials, and the haematology-focused academic unit that administers the registry. The Australasian Myeloma Research Consortium (AMARC) uses the MRDR as a platform for clinical trials and recruitment to trials is underway.
Priorities for the next 12 months
Linkage with state-based cancer registries
- Review of definitions
- Internal consistency checks
- Outlier identification and investigation
Formalisation of prospective international registry collaborations
Ongoing targeted expansion of sites
Enhance M1000 accrual