Projects

The MRDR has numerous investigator-initiated sub-studies and projects that address additional research questions. Researchers are from a variety of institutes and centres, with mixed backgrounds and levels of experience. The MRDR welcomes proposals for use of registry data and provides support as far as possible. All proposals must be reviewed and approved by the MRDR Steering Committee.

IMPROVE: Immunoglobulins in Myeloma Patients: Research into Outcomes, Variation in practice, and Epidemiology

Patients with multiple myeloma (MM) are at risk of infection because of low levels of protective antibodies, and immunoglobulin (Ig) therapy is used to replace missing antibodies to prevent or treat infections in MM. Ig therapy is expensive (more than $60 million dollars annually in MM) and blood cancers are the most common indication for its use in Australia, with increasing demand. 

There is substantial variation in Ig use in MM across Australia and the reason is unclear. Using the MRDR, this project will collect current ‘real world’ Australian clinical and laboratory information on Ig use to monitor practice, costs, and outcomes; to plan and deliver care; and to guide policy and clinical practice. We will also collect samples to store and test in future studies.

This study will also provide a new and lower cost framework for conducting future large clinical trials of Ig therapy in MM and similar conditions in Australia.

The study

IMPROVE is funded by the National Blood Authority and offers a $500 per patient payment for information on infection and immunoglobulin use in patients with MM. We have identified the target 300 patients across Australian MRDR sites. The IMPROVE blood biobank welcomes more participating sites in Victoria with a $200 additional per patient payment - a limited transport time restricts recruitment to within Victoria.

EpiMAP Myeloma: Epidemiological Modelling to deliver better care for Australian Patients with Myeloma

The true incidence and prevalence of multiple myeloma (MM) in Australia remains unknown, a reflection of the complex nature of the disease and its associated diagnostic challenges. The treatment pathway for MM is highly complex and there is a host of emerging therapeutics which will continue to escalate treatment complexity and costs, and clinical trials are rarely generalisable to the broader MM population.

EpiMAP Myeloma will address a critical knowledge gap in MM, as the current prevalence and future incidence of MM in Australia is unknown. This project will also build Australian capacity in epidemiological modelling in blood cancers, establishing methods that will be applied to other cancers, such as lymphoma, for which accurate patient estimates are also required in order to plan for and evaluate the impact of new, high-cost therapies.

The study

EpiMAP Myeloma is funded by the MRFF Preventive and Public Health - Targeted Health System and Community Organisation Research Grant. The project will develop a novel patient-level simulation model through linking the Myeloma and Related Diseases Registry (MRDR) dataset to the Commonwealth administrative data. The model will estimate patients in Australia with multiple myeloma (MM) who will require treatment over the next five years, the disease trajectories, outcomes and their associated quality of life and costs. The model will be available for use in Commonwealth decision making for future funding of high-cost therapies for MM.

My-PROMPT: Patient Reported Outcome Measures in multiple myeloma: real-time rePorTing to improve care

Multiple myeloma (MM) is associated with a high burden of disease, compromising patients’ health-related quality of life (HRQOL). Patient reported outcome measures (PROM) are used to measure HRQOL. Whether incorporating PROM into routine care improves MM outcomes has not been studied. In order to design a clinical trial to evaluate impact of real-time PRO reporting on outcomes, feasibility and acceptability to clinicians and patients of delivering such an intervention needed to be evaluated.

The study

We performed a pilot, randomised controlled trial to assess the feasibility of real-time feedback of a PROM in newly diagnosed MM to treating clinicians. Thirty-two patients were enrolled. The intervention arm completed a disease-specific PROM (MyPOS) before 4 clinic visits: baseline, 1, 6 and 10 months. Treating clinicians were given a summary of MyPOS results before visits. The control arm completed MyPOS at baseline and 10 months. Evaluations of the intervention were completed by patients and clinicians and follow-up interviews were conducted. Primary feasibility outcomes were patient and clinician satisfaction scores for MyPOS use in the intervention. We have shown that the intervention is feasible and acceptable to patients and clinicians and are working towards a larger study using a platform to deliver PRO results to clinicians at multiple sites across Australia with the support of Monash Helix. This study is published and was funded by Gilead and Takeda.

Renal Impairment at diagnosis in myeloma: an analysis of patient characteristics, treatment, and impact on outcomes

Researcher(s)

Prof Joy Ho, Clinical Professor and Senior staff specialist, Haematology, Royal Prince Alfred Hospital, Sydney

Progress

Published 2019 - Project complete

The Myeloma Landscape in Australia and New Zealand (ANZ): The first years of the Myeloma and Related Diseases Registry (MRDR)

Researcher(s)

Dr Krystal Bergin, Consultant haematologist & PhD student, The Alfred Hospital, Melbourne

Progress

Published in Clinical Lymphoma, Myeloma and Leukemia: January 29, 2021. Project complete

Rates of Upfront Autologous Stem Cell Transplantation (ASCT) in Newly Diagnosed Multiple Myeloma (NDMM): Comparing ASCT recipients and non-recipients

Researcher(s)

Dr Krystal Bergin, Consultant haematologist & PhD student, The Alfred Hospital, Melbourne

Progress

Submitted for publication (Nov 2020)

Pacific Islanders with MM in New Zealand compared to other ethnicities: characteristics, treatment and outcomes

Researcher(s)

A/Prof Hilary Blacklock, Consultant haematologist, Middlemore Hospital, Auckland, New Zealand

Progress

Presented at International Myeloma Workshop 2019, Boston, USA and Blood 2019, Perth. Manuscript in progress.

The Impact of Body Weight on Melphalan dosing in Autologous Hematopoietic Stem Cell Transplantation for Multiple Myeloma: Master's thesis topic

Researcher(s)

Dervla O'Ryan, Masters Student and Clinical Pharmacist, The Alfred Hospital, Melbourne

Progress

Masters thesis sucessfully completed - Project complete

Overview of imaging modalities in multiple myeloma - used for presentation on 18F-FDG-PET/CT to support uptake of the internationally preferred imaging modality in Australia

Researcher(s)

Dr Kylee McLachlan, Consultant Haematologist, Peter MacCallum Cancer Centre, Melbourne

Progress

Oral Presentation at Blood 2018 - Project complete

Predictors of early mortality in multiple myeloma: Results from the Australian and New Zealand Myeloma and Related Diseases Registry (MRDR)

Researcher(s)

A/Prof Zoe McQuilten, School of Public Health and Preventive Medicine, Monash University (Consultant haematologist)

Progress

Submission for publication

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

Researcher(s)

Dr Elizabeth Moore, Research Fellow, School of Public Health and Preventive Medicine, Monash University

Progress

To be worked up for publication

Analysis of bortezomib-based therapy in non-transplant eligible multiple myeloma

Researcher(s)

A/Prof Peter Mollee (Consultant haematologist) and Dr Stephen Boyle (Registrar), Princess Alexandra Hospital, Brisbane

Progress

Poster presentation at the International Myeloma Workshop in Boston, Sept 2019; for publication.

Analysis of recognition, timing, treatment and outcomes in MM patients with biochemical relapse

Researcher(s)

Dr Georgia McCaughan, A/Prof Hang Quach and Dr Matthew Ku, Consultant haematologists, St Vincent's Hospital, Melbourne

Progress

Agreement from 6 sites to participate. Has lead ethics approval. Obtaining governance approval at sites.

Outcomes for melphlan / Velcade-based ASCT in high risk myeloma.

Researcher(s)

Dr David Routledge, Consultant Haematologist, Peter MacCallum Cancer Centre, Melbourne

Progress

Identifying groups to compare

Investigating C-terminal telopeptide 1 (CTX-1) as a marker of high risk for progressing to active MM in smouldering MM (SMM) patients.

Researcher(s)

Dr Kate Vandyke, Research Fellow, University of Adelaide

Progress

M1000 Biobank request - samples and clinical data provided.

Methylation biomarkers in plasma cell free DNA in myeloma

Researcher(s)

Prof Ian Morison, Professor of Pathology, Dunedin School of Medicine, University of Otago

Progress

M1000 Biobank request - samples and clinical data provided

Treatment patterns in relapsed / refractory MM in Australia

Researcher(s)

Dr Jessie Zhao, Registrar, Dorevitch Pathology, Melbourne

Progress

Oral presentation at Blood 2019 in Perth, Australia; for publication

Patterns of bone supportive care and the impact of antiresorptive therapy, vitamin D, and calcium levels on the clinical outcomes of patients with multiple myeloma in Australia

Researcher(s)

A/Prof Hang Quach, Consultant haematologist, St Vincent's Hospital, Melbourne

Progress

On hold

Comparison of characteristics and outcomes of patients diagnosed with MM by traditional CRAB criteria versus "newer" biomarkers of malignancy (and high risk SMM using 20/20/20 criteria)

Researcher(s)

Prof Joy Ho, Clinical Professor and Senior staff specialist, Haematology, Royal Prince Alfred Hospital, Sydney

Progress

Analysis complete, writing draft manuscript: presented at National Myeloma Workshop and ASH 2020.

Outcomes for patients with early progression or sub-optimal response in multiple myeloma in Australia and New Zealand

Researcher(s)

Prof Andrew Spencer, Head of Malignant Haematology & Stem Cell Transplantation Service, Alfred Health

Progress

Oral presentation at ASH 2019, Orlando, USA. Presented at National Myeloma Workshop 2020 - writing up for publication.

Regional outcomes in multiple myeloma in Australia

Researcher(s)

Dr Louise Imlay, Lismore Hospital, NSW - Consultant Haematologist

Progress

Preliminary analysis done, waiting for data to mature.

Case-control study to establish the role of tandem auto-allo-SCT in transplant-eligible patients in relapsed / refractory MM

Researcher(s)

Aditya Tedjaseputra, Consultant haematologist, Alfred Hospital

Progress

Groups identified. Analysing the data

Comparison of patients with newly diagnosed MM who are transplant ineligible, receiving bortezomib versus lenalidomide

Researcher(s)

Natthida Khajornjiraphan, Master of Clinical Research Methods student, Monash University, and Clinical Trial Coordinator (Haematology), St Vincent's Hospital Melbourne

Progress

Analysis complete - presented at the National Myeloma Workshop 2020, waiting for data to mature.

Causes of death in patients with multiple myeloma

Researcher(s)

Rosalyn Cao, Master of Public Health student, Monash University

Progress

Working up for publication. Presented at the National Myeloma Workshop 2020

Outcomes of patients with multiple cytogenetic abnormalities at diagnosis

Researcher(s)

Dr Habib Sadiqi (Registrar) and Dr Brad Augustson (Consultant Haematologist), Sir Charles Gairdner Hospital

Progress

Analysis complete - presented at the National Myeloma Workshop 2020. For publication.

Infection prophylaxis and infection outcomes in patients with myeloma

Researcher(s)

Dr Khai Li Chai, PhD student and Consultant Haematologist, Northern Health

Progress

In preparation

Myeloma outcomes based on socio-economic status

Researcher(s)

Dr Cindy Khu, Prof Andrew Spencer, Consultant Haematologists, Alfred Hospital

Progress

In preparation

Impact of daratumumab on real-world outcomes in multiple myeloma (MM)

Researcher(s)

Dr Sueh-li Lim, Prof Andrew Spencer, Consultant Haematologists, Alfred Hospital

Progress

To start in 2021