TY - JOUR
T1 - The establishment of a multiple myeloma clinical registry in the Asia–Pacific region
T2 - The Asia–Pacific Myeloma and Related Diseases Registry (APAC MRDR)
AU - Aoki, Naomi
AU - Chen, Pin Yen
AU - Chen, Wenming
AU - Chng, Wee Joo
AU - Gan, Gin Gin
AU - Goh, Yeow Tee
AU - Hou, Jian
AU - Huang, Jeffrey
AU - Kim, Kihyun
AU - Lee, Je Jung
AU - Lu, Jin
AU - McQuilten, Zoe K.
AU - Min, Chang Ki
AU - Moore, Elizabeth
AU - Oliver, Laura
AU - Waters, Neil A.
AU - Wellard, Cameron
AU - Wood, Erica M.
AU - Yeh, Su Peng
AU - Spencer, Andrew
AU - on behalf of the APAC MRDR Investigators
N1 - Funding Information:
The authors thank all patients participating in the APAC MRDR. We acknowledge the participating hospitals, Principal Investigators, Study Coordinators, Janssen-Cilag, APAC MRDR Steering Committee and APAC MRDR Study Team Professor Andrew Spencer (Chair), Alfred Health, Melbourne, Australia Professor Wenming Chen, Beijing Chaoyang Hospital, China Professor Wee Joo Chng, National University Hospital, Singapore Professor Jian Hou, Renji Hospital, Shanghai, China Dr Jeffrey Huang, National Taiwan University Hospital, Taiwan Professor Gin Gin Gan, Universiti Malaya Medical Centre, Malaysia Professor Yeow Tee Goh, Singapore General Hospital, Singapore Professor Kihyun Kim, Sungkyunkwan University School of Medicine, Samsung Medical Center, Korea Professor Je Jung Lee, Chonnam National University Hospital, Korea Professor Jin Lu, Peking University People\u2019s Hospital, Beijing, China Professor Zoe McQuilten, School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia Professor Chang Ki Min, Seoul St Mary\u2019s Hospital, Korea Dr Elizabeth Moore, School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia Professor Erica Wood, School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia Dr Su-Peng Yeh, China Medical University Hospital, Taiwan Approved sites Ampang Hospital Dr Sen Mui Tan Asan Medical Center Dr Dok Hyun Yoon Beijing Chaoyang Hospital Prof Wenming Chen Bundang Seoul National University Hospital Dr Soo-Mee Bang China Medical University Hospital Dr Su-Peng Yeh Dong-A University Hospital Dr Sung-Hyun Kim Hallym University Sacred Heart Hospital Dr Hyojung Kim Hospital Pulau Pinang Dr Ai Sim Goh University Kebangsaan Malaysia Medical Centre Dr Nor Saaidah Binti Kamal Rodin Kosin University Gospel Hospital Dr Hosup Lee Kyungpook National University Hospital Dr Joonho Moon National Taiwan University Hospital Dr Jeffrey Huang National University Hospital Singapore Prof Wee Joo Chng Pusan National University Hospital Dr Hojin Shin Renji Hospital Prof Jian Hou Samsung Medical Center Prof Kihyun Kim Seoul National University Hospital Dr Sungsoo Yoon Seoul St Mary\u2019s Hospital Prof Chang Ki Min Singapore General Hospital Prof Yeow Tee Goh Subang Jaya Medical Centre Dr Soo Chin Ng Sunway Medical Centre Dr Chieh Lee Wong Tan Tock Seng Hospital Dr Allison Tso Universiti Malaya Medical Centre Prof Gin Gin Gan Yonsei University Severance Hospital Dr Jinseok Kim Sites in Progress Peking University People\u2019s Hospital Prof Jin Lu Ms Naomi Aoki Ms Laura Oliver Mr Neil Waters Dr Cameron Wellard Dr Pin-Yen Chen
Funding Information:
The APAC MRDR has received funding from Janssen-Cilag.
Publisher Copyright:
© The Author(s) 2024.
PY - 2024/5/2
Y1 - 2024/5/2
N2 - Background: Multiple myeloma (MM) is the second most common haematological cancer worldwide. Along with related diseases including monoclonal gammopathy of undetermined significance (MGUS), plasma cell leukaemia (PCL) and plasmacytoma, MM incidence is rising, yet it remains incurable and represents a significant disease burden. Clinical registries can provide important information on management and outcomes, and are vital platforms for clinical trials and other research. The Asia–Pacific Myeloma and Related Diseases Registry (APAC MRDR) was developed to monitor and explore variation in epidemiology, treatment regimens and their impact on clinical outcomes across this region. Here we describe the registry’s design and development, initial data, progress and future plans. Methods: The APAC MRDR was established in 2018 as a multicentre collaboration across the Asia–Pacific, collecting prospective data on patients newly diagnosed with MM, MGUS, PCL and plasmacytoma in Korea, Singapore, Malaysia and Taiwan, with China recently joining. Development of the registry required a multidisciplinary team of clinicians, researchers, legal and information technology support, and financial resources, as well as local clinical context from key opinion leaders in the APAC region. Written informed consent is obtained and data are routinely collected throughout treatment by hospital staff. Data are stored securely, meeting all local privacy and ethics requirements. Data were collected from October 2018 to March 2024. Results: Over 1700 patients from 24 hospitals have been enrolled onto the APAC MRDR to date, with the majority (86%) being newly diagnosed with MM. Bortezomib with an immunomodulatory drug was most frequently used in first-line MM therapy, and lenalidomide-based therapy was most common in second-line. Establishment and implementation challenges include regulatory and a range of operational issues. Conclusion: The APAC MRDR is providing ‘real-world’ data to participating sites, clinicians and policy-makers to explore factors influencing outcomes and survival, and to support high quality studies. It is already a valuable resource that will continue to grow and support research and clinical collaboration in MM and related diseases across the APAC region.
AB - Background: Multiple myeloma (MM) is the second most common haematological cancer worldwide. Along with related diseases including monoclonal gammopathy of undetermined significance (MGUS), plasma cell leukaemia (PCL) and plasmacytoma, MM incidence is rising, yet it remains incurable and represents a significant disease burden. Clinical registries can provide important information on management and outcomes, and are vital platforms for clinical trials and other research. The Asia–Pacific Myeloma and Related Diseases Registry (APAC MRDR) was developed to monitor and explore variation in epidemiology, treatment regimens and their impact on clinical outcomes across this region. Here we describe the registry’s design and development, initial data, progress and future plans. Methods: The APAC MRDR was established in 2018 as a multicentre collaboration across the Asia–Pacific, collecting prospective data on patients newly diagnosed with MM, MGUS, PCL and plasmacytoma in Korea, Singapore, Malaysia and Taiwan, with China recently joining. Development of the registry required a multidisciplinary team of clinicians, researchers, legal and information technology support, and financial resources, as well as local clinical context from key opinion leaders in the APAC region. Written informed consent is obtained and data are routinely collected throughout treatment by hospital staff. Data are stored securely, meeting all local privacy and ethics requirements. Data were collected from October 2018 to March 2024. Results: Over 1700 patients from 24 hospitals have been enrolled onto the APAC MRDR to date, with the majority (86%) being newly diagnosed with MM. Bortezomib with an immunomodulatory drug was most frequently used in first-line MM therapy, and lenalidomide-based therapy was most common in second-line. Establishment and implementation challenges include regulatory and a range of operational issues. Conclusion: The APAC MRDR is providing ‘real-world’ data to participating sites, clinicians and policy-makers to explore factors influencing outcomes and survival, and to support high quality studies. It is already a valuable resource that will continue to grow and support research and clinical collaboration in MM and related diseases across the APAC region.
KW - Clinical registry
KW - Epidemiology
KW - Multiple myeloma
KW - Real-world data
UR - http://www.scopus.com/inward/record.url?scp=85191965681&partnerID=8YFLogxK
U2 - 10.1186/s12874-024-02227-0
DO - 10.1186/s12874-024-02227-0
M3 - Article
C2 - 38698331
AN - SCOPUS:85191965681
SN - 1471-2288
VL - 24
JO - BMC Medical Research Methodology
JF - BMC Medical Research Methodology
IS - 1
M1 - 102
ER -