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.
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.
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.
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.
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
Submitted for publication (Nov 2020)
A/Prof Hilary Blacklock, Consultant haematologist, Middlemore Hospital, Auckland, New Zealand
Presented at International Myeloma Workshop 2019, Boston, USA and Blood 2019, Perth. Manuscript in progress.
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)
Submission for publication
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; for publication.
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