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.
Treatment of multiple myeloma (MM) is now very complex and costly. However, survival benefits achieved with new therapies in clinical trials are not being seen in clinical practice, in part because many MM patients stop therapy early, often due to side-effects. We hypothesise that if treating clinicians are made aware of emerging patient symptoms, thus informing timely intervention, duration on therapy can be optimised, enhancing treatment effectiveness and making more efficient use of these high-cost therapies. Routine use of patient-reported outcome measures (PROMs), including feedback to treating clinicians, has been shown to improve outcomes in non-haematological cancer populations, but has not been evaluated in MM care.
We showed in the pilot MY-PROMPT randomised controlled trial, that real-time feedback of patient-reported outcome measures (PROMs) in MM is feasible and acceptable to patients and clinicians. The MY-PROMPT-2 trial will build on this experience by testing whether real-time feedback of PROMs to clinicians improves event-free survival (time from randomisation to permanent discontinuation of treatment regimen) in patients with relapsed MM receiving PBS-funded standard of care (SoC), compared to SoC alone.
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.
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.
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.
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.
Prof Joy Ho, Clinical Professor and Senior staff specialist, Haematology, Royal Prince Alfred Hospital, Sydney
Published 2019 - Project complete
Dr Krystal Bergin, Consultant haematologist & PhD student, The Alfred Hospital, Melbourne
Published in Clinical Lymphoma, Myeloma and Leukemia: January 29, 2021. Project complete
Dr Krystal Bergin, Consultant haematologist & PhD student, The Alfred Hospital, Melbourne
Published in Bone Marrow Transplantation: 19 May 2021. Project complete.
A/Prof Hilary Blacklock, Consultant haematologist, Middlemore Hospital, Auckland, New Zealand
Presented at International Myeloma Workshop 2019, Boston, USA and Blood 2019, Perth. Published in Clinical Lymphoma, Myeloma and Leukemia: April 8th, 2022. Project complete
Dervla O'Ryan, Masters Student and Clinical Pharmacist, The Alfred Hospital, Melbourne
Masters thesis sucessfully completed - Project complete
Dr Kylee McLachlan, Consultant Haematologist, Peter MacCallum Cancer Centre, Melbourne
Oral Presentation at Blood 2018 - Project complete
A/Prof Zoe McQuilten, School of Public Health and Preventive Medicine, Monash University (Consultant haematologist)
Published in British Journal of Haematology: June 9th 2022. Project complete.
Dr Elizabeth Moore, Research Fellow, School of Public Health and Preventive Medicine, Monash University
To be worked up for publication
A/Prof Peter Mollee (Consultant haematologist) and Dr Stephen Boyle (Registrar), Princess Alexandra Hospital, Brisbane
Poster presentation at the International Myeloma Workshop in Boston, Sept 2019. Published in European Journal of Haematology: June 15, 2021. Project complete.
Dr Georgia McCaughan, A/Prof Hang Quach and Dr Matthew Ku, Consultant haematologists, St Vincent's Hospital, Melbourne
Agreement from 6 sites to participate. Has lead ethics approval. Obtaining governance approval at sites.
Dr David Routledge, Consultant Haematologist, Peter MacCallum Cancer Centre, Melbourne
Identifying groups to compare
Dr Kate Vandyke, Research Fellow, University of Adelaide
M1000 Biobank request - samples and clinical data provided.
Prof Ian Morison, Professor of Pathology, Dunedin School of Medicine, University of Otago
M1000 Biobank request - samples and clinical data provided
Dr Jessie Zhao, Registrar, Dorevitch Pathology, Melbourne
Oral presentation at Blood 2019 in Perth, Australia; for publication
A/Prof Hang Quach, Consultant haematologist, St Vincent's Hospital, Melbourne
On hold
Prof Joy Ho, Clinical Professor and Senior staff specialist, Haematology, Royal Prince Alfred Hospital, Sydney
Analysis complete, writing draft manuscript: presented at National Myeloma Workshop and ASH 2020.
Prof Andrew Spencer, Head of Malignant Haematology & Stem Cell Transplantation Service, Alfred Health
Oral presentation at ASH 2019, Orlando, USA. Presented at National Myeloma Workshop 2020 - writing up for publication.
Dr Louise Imlay, Lismore Hospital, NSW - Consultant Haematologist
Preliminary analysis done, waiting for data to mature.
Aditya Tedjaseputra, Consultant haematologist, Alfred Hospital
Groups identified. Analysing the data
Natthida Khajornjiraphan, Master of Clinical Research Methods student, Monash University, and Clinical Trial Coordinator (Haematology), St Vincent's Hospital Melbourne
Analysis complete - presented at the National Myeloma Workshop 2020, waiting for data to mature.
Rosalyn Cao, Master of Public Health student, Monash University
Working up for publication. Presented at the National Myeloma Workshop 2020
Dr Habib Sadiqi (Registrar) and Dr Brad Augustson (Consultant Haematologist), Sir Charles Gairdner Hospital
Analysis complete - presented at the National Myeloma Workshop 2020. For publication.
Dr Khai Li Chai, PhD student and Consultant Haematologist, Northern Health
In preparation
Dr Cindy Khu, Prof Andrew Spencer, Consultant Haematologists, Alfred Hospital
In preparation
Dr Sueh-li Lim, Prof Andrew Spencer, Consultant Haematologists, Alfred Hospital
To start in 2021
John Coutsouvelis- senior clinical pharmacist at the Alfred Hospital
Poster for internal Monash student event. Data is being reviewed for further possibilities.
Henry Chan- Haematologist at North Shore Hospital, New Zealand
Proposal approved by MRDR SC. Provided overview of data in this area. Abstract submitted for Blood 2022.
Justin Ng- Haematology trainee at the Alfred Hospital.
Proposal approved by MRDR SC. Abstract submitted for IMW 2022 and Blood 2022.
Joanne Tan- Alfred Hospital
Proposal approved by MRDR SC. Abstract submitted for IMW 2022 and Blood 2022.