The Australian and New Zealand (ANZ) MRDR now has close to 3000 patients registered! A big thank you to everyone at the 39 approved ANZ sites for making this happen. Your time and efforts are much appreciated! Welcome to Liverpool Hospital in Sydney, the latest site to commence recruitment; and Border Medical Oncology private clinic in Albury-Wodonga have recently joined the registry boosting the regional representation of MRDR.
Publications & presentations
An MRDR paper by Prof Joy Ho was recently published on renal impairment at diagnosis in patients with multiple myeloma; looking at patient characteristics, treatment and clinical outcomes. The registry also recently had three submissions accepted for presentation at the International Myeloma Workshop in Boston, USA. The presentations are:
- Pacific Islanders with multiple myeloma are younger and have inferior survival when compared to other ethnicities: a study from the Australian and New Zealand Myeloma and Related Diseases Registry (MRDR)
- Receiving four or less cycles of therapy predicts poor survival in newly diagnosed transplant ineligible patients with myeloma who are treated with bortezomib-based induction
- Patient-reported outcome measures in MM: real-time reporting to improve care (My-PROMPT) - a pilot randomised controlled trial
In addition to this, four submissions from the MRDR were made for presention at the Blood 2019 conference in Perth in October, and two submissions for presentation at ASH in December, the key haematology meeting in the USA. Publications and presentations are listed in 'Outputs'.
The Myeloma 1000 Project has over 350 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. 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. The IMPROVE blood biobank is recruiting and welcomes more participating sites in Victoria; a limited transport time restricts recruitment to within this state.
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. It targets newly diagnosed patients within 7 days of starting first treatment. Recruitment is complete and the study is being written up for publication and presentation at the International Myeloma Workshop 2019 in Boston. Takeda and Gilead fund this study.
The MRDR received funding from Janssen to replicate the registry in the Asia-Pacific (APAC) region. The APAC MRDR is a 'sister' project to the MRDR, which was established in 2018 to monitor access to and patterns of care and their outcomes in patients living in the APAC region. The APAC MRDR has its own steering committee and country-specific databases, and collects the same data as the MRDR. The APAC MRDR, now has eleven hospitals with ethics approval to participate. Hospitals in Korea and Singapore are actively recruiting with over 180 participants enrolled so far. The APAC MRDR will be expanding to include hospitals from Malaysia. We are excited about this collaboration with our colleagues in the Asia-Pacific region and the opportunity to study patient characteristics, treatment and outcomes in each country. For more information on the APAC MRDR go to: https://apacmrdr.org/
Our second linkage with the Australian National Death Index has occurred and unregistered deaths will be updated. The second New Zealand mortality data linkage is in process. Mortality is a key outcome with potential for loss to follow-up and linking annually with national death registers in both countries is one of the data quality measures being implemented by the MRDR to ensure the accuracy of this outcome.
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 and recruitment to several trials is underway. For information on trials and their patient accrual go to: https://www.amarconline.org/ . 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, is in the preparation phase.
Priorities for the next 12 months