Design and development of the Australian and New Zealand (ANZ) myeloma and related diseases registry.
Plasma cell dyscrasias (PCD) are a spectrum of disorders resulting from the clonal expansion of plasma cells, ranging from the pre-malignant condition monoclonal gammopathy of undetermined significance (MGUS) to multiple myeloma (MM). MM generates a significant burden of disease on the community and it is predicted that it will increase in both incidence and prevalence owing to an ageing population and longer survival secondary to new therapeutic options. Robust and comprehensive clinical data are currently lacking but are required to define current diagnostic, investigational and management patterns in Australia and New Zealand (ANZ) for comparison to both local and international guidelines for standards of care. A clinical registry can provide this information and subsequently support development of strategies to address any differences, including providing a platform for clinical trials. The Myeloma and Related Diseases Registry (MRDR) was developed to monitor and explore variations in practices, processes and outcomes in ANZ and provide benchmark outcomes nationally and internationally for PCD. This paper describes the MRDR aims, development and implementation and discusses challenges encountered in the process.



The MRDR was established in 2012 as an online database for a multi-centre collaboration across ANZ, collecting prospective data on patients with a diagnosis of MGUS, MM, solitary plasmacytoma or plasma cell leukaemia. Development of the MRDR required multi-disciplinary team participation, IT and biostatistical support as well as financial resources.



More than 1250 patients have been enrolled at 23 sites to date. Here we describe how database development, data entry and securing ethics approval have been major challenges for participating sites and the coordinating centre, and our approaches to resolving them. Now established, the MRDR will provide clinically relevant and credible monitoring, therapy and 'real world' outcome data, to support the conduction of high quality studies. In addition, the Myeloma 1000 sub-study is establishing a repository of paired peripheral blood specimens from registry patients to study mechanisms underlying disease progression.



Establishment of the MRDR has been challenging, but it is a valuable investment that will provide a platform for coordinated national and international collaboration for clinical research in PCD in ANZ.
Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, VIC, Australia.|The Alfred Hospital, Melbourne, VIC, Australia.
Krystal
K
Bergin
Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, VIC, Australia.|The Alfred Hospital, Melbourne, VIC, Australia.
Elizabeth
E
Moore
Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, VIC, Australia.
Zoe
Z
McQuilten
Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, VIC, Australia.
Erica
E
Wood
Sir Charles Gairdner Hospital, Perth, WA, Australia.
Bradley
B
Augustson
Middlemore Hospital, Middlemore, New Zealand.
Hilary
H
Blacklock
Royal Prince Alfred Hospital, Sydney, NSW, Australia.
Joy
J
Ho
Royal Adelaide Hospital, Adelaide, SA, Australia.
Noemi
N
Horvath
Royal Prince Alfred Hospital, Sydney, NSW, Australia.
Tracy
T
King
Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, VIC, Australia.
John
J
McNeil
Princess Alexandra Hospital, Brisbane, QLD, Australia.
Peter
P
Mollee
St Vincent's Hospital Melbourne, Melbourne, VIC, Australia.
Hang
H
Quach
Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, VIC, Australia.|School of Public Health, Curtin University, Perth, WA, Australia.
Christopher M
CM
Reid
Myeloma Foundation Australia, Melbourne, VIC, Australia.
Brian
B
Rosengarten
The Alfred Hospital, Melbourne, VIC, Australia.|Peninsula Health, Frankston, VIC, Australia.
Patricia
P
Walker
Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, VIC, Australia. aspencer@netspace.net.au.|The Alfred Hospital, Melbourne, VIC, Australia. aspencer@netspace.net.au.|South Block, Alfred Health, 55 Commercial Road, Melbourne, VIC, 3004, Australia. aspencer@netspace.net.au.
Andrew
A
Spencer
D001315:Australia / Q000453:epidemiology; D016208:Databases, Factual / Q000706:statistics & numerical data*; D018450:Disease Progression; D006801:Humans; D015994:Incidence; D008490:Medical Informatics / Q000379:methods / Q000706:statistics & numerical data; D009101:Multiple Myeloma / Q000453:epidemiology*; D009520:New Zealand / Q000453:epidemiology; D010265:Paraproteinemias / Q000453:epidemiology*; D015995:Prevalence; D012042:Registries / Q000706:statistics & numerical data*
Development; Implementation; Multiple Myeloma; Plasma cell dyscrasia; Real-world; Registry