The establishment of a multiple myeloma clinical registry in the Asia-Pacific region: The Asia-Pacific Myeloma and Related Diseases Registry (APAC MRDR)

Aoki N 1 , Chen PY 1 , Chen W 2 , Chng WJ 3 , Gan GG 4 , Goh YT 5 Show all authors , Hou J 6 , Huang J 7 , Kim K 8 , Lee JJ 9 , Lu J 10 , McQuilten ZK 1 , Min CK 11 , Moore E 1 , Oliver L 1 , Waters NA 1 , Wellard C 1 , Wood EM 12 , Yeh SP 13 , Spencer A 14 , APAC MRDR Investigators

Affiliations 

  • 1 School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia
  • 2 Beijing Chaoyang Hospital, Beijing, China
  • 3 National University Cancer Institute, Singapore, Singapore
  • 4 Universiti Malaya Medical Centre, Selangor, Malaysia
  • 5 Singapore General Hospital, Singapore, Singapore
  • 6 Renji Hospital, Shanghai, China
  • 7 National Taiwan University Hospital, Taipei City, Taiwan
  • 8 Sungkyunkwan University School of Medicine, Samsung Medical Center, Seoul, Korea
  • 9 Chonnam National University Hospital, Gwangju, Korea
  • 10 Peking University People's Hospital, Beijing, China
  • 11 Seoul St Mary's Hospital, Seoul, Korea
  • 12 School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia. [email protected]
  • 13 China Medical University Hospital, Taichung City, Taiwan
  • 14 The Alfred Hospital, Melbourne, Australia
BMC Med Res Methodol, 2024 May 02;24(1):102.
PMID: 38698331 DOI: 10.1186/s12874-024-02227-0

Abstract

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.

* Title and MeSH Headings from MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine.

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