{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,27]],"date-time":"2026-10-27T20:48:54Z","timestamp":1793134134058,"version":"4.5.0"},"reference-count":30,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2024,5,2]],"date-time":"2024-05-02T00:00:00Z","timestamp":1714608000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2024,5,2]],"date-time":"2024-05-02T00:00:00Z","timestamp":1714608000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["BMC Med Res Methodol"],"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Background<\/jats:title>\n                <jats:p>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\u2013Pacific 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\u2019s design and development, initial data, progress and future plans.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>The APAC MRDR was established in 2018 as a multicentre collaboration across the Asia\u2013Pacific, 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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusion<\/jats:title>\n                <jats:p>The APAC MRDR is providing \u2018real-world\u2019 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.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s12874-024-02227-0","type":"journal-article","created":{"date-parts":[[2024,5,2]],"date-time":"2024-05-02T12:02:02Z","timestamp":1714651322000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["The establishment of a multiple myeloma clinical registry in the Asia\u2013Pacific region: The Asia\u2013Pacific Myeloma and Related Diseases Registry (APAC MRDR)"],"prefix":"10.1186","volume":"24","author":[{"given":"Naomi","family":"Aoki","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Pin-Yen","family":"Chen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wenming","family":"Chen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wee Joo","family":"Chng","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gin Gin","family":"Gan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yeow Tee","family":"Goh","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jian","family":"Hou","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jeffrey","family":"Huang","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kihyun","family":"Kim","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Je Jung","family":"Lee","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jin","family":"Lu","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Zoe K.","family":"McQuilten","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Chang Ki","family":"Min","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elizabeth","family":"Moore","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laura","family":"Oliver","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Neil A.","family":"Waters","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cameron","family":"Wellard","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Erica M.","family":"Wood","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Su-Peng","family":"Yeh","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrew","family":"Spencer","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"the APAC MRDR Investigators","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,5,2]]},"reference":[{"issue":"9","key":"2227_CR1","doi-asserted-by":"publisher","first-page":"1221","DOI":"10.1001\/jamaoncol.2018.2128","volume":"4","author":"AJ Cowan","year":"2018","unstructured":"Cowan AJ, et al. 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Hospital-specific ethics approval to participate in the APAC MRDR has been obtained from the following institutions: Alfred Health Ethics Committee, Alfred Health, Melbourne, Australia (reference: HREC\/16\/Alfred\/126); Centre for Research and Instrumentation Management, Universiti Kebangsaan Malaysia, Kuala Lumpur, Malaysia (reference: UKM PPI\/111\/8\/JEP-2020\u2013456); Clinical Research Review Committee, Seoul St Mary\u2019s Hospital, Catholic University of Korea, Seoul, Republic of Korea (reference: 2018\u20131441-0031); Dong-A University Hospital Institutional Review Board, Dong-A University Hospital, Busan, Republic of Korea (reference: DAUHIRB-19\u2013064); Ethics Committee of Beijing Chaoyang Hospital, Capital Medical University, Beijing, China (reference: 2022\u201310-26\u20132); Hallym University Sacred Heart Hospital Institutional Review Board, Hallym University Sacred Heart Hospital, Anyang City, Republic of Korea (reference: 2019\u201305-007); Health Informatics Centre (PIK), Malaysia Ministry of Health, Putrajaya, Malaysia (reference: KKM. 400\u201310\/2\/375); Independent Ethics Committee, Ramsay Sime Barby Health Care, Selangor Darul Ehsan, Malaysia (reference: 201,910.1); Institutional Review Board, Asan Medical Center, Seoul, Republic of Korea (reference: 2019\u20131572); Institutional Review Board, Severance Hospital\/Yonsei University College of Medicine, Seoul, Republic of Korea (reference: 4\u20132018-0343); Kosin University Gospel Hospital Clinical Trials and Medical Research Ethics Review Committee, Kosin University Gospel Hospital, Busan, Republic of Korea (reference: KUGH 2020\u201302-016); Kyungpook National University Hospital Clinical Trail Review Board, Kyungpook National University Hospital, Daegu, Republic of Korea (reference: KNUH 2019\u201310-041); Medical Research Ethics Committee University Malaya Medical Centre, University Malaya Medical Centre, Kuala Lumpur, Malaysia (reference: 2019711\u20137638); National Health Care Group Domain Specific Review Board, Singapore, Singapore (reference: 2018\/00620); Pusan National University Hospital Research Ethics Review Committee, Pusan National University Hospital, Busan, Republic of Korea (reference: H-1911\u2013013-085); Renji Hospital Ethics Committee, Shanghai Jiaotong University School of Medicine, Shanghai, China (reference: KY2021-084-B); Research Ethics Committee, China Medical University and Hospital, Taichung, Taiwan (CMUH109-REC3-046); Research Ethics Committee, National Taiwan University Hospital, Taipei, Taiwan (201909014RIND); Samsung Seoul Hospital Institutional Review Board, Samsung Medical Center, Seoul, Republic of Korea (reference: SMC 2018\u201303-049\u2013023); Seoul National University Bundang Hospital Institutional Review Board, Seoul National University Bundang Hospital, Seoul, Republic of Korea (reference: B-1904\u2013534-304); Seoul National University College of Medicine\/Seoul National University Hospital Medical Research Ethics Review Committee, Seoul, Republic of Korea (reference: H-1808\u2013164-968); Sunway Medical Centre Independent Research Ethics Committee, Sunway Medical Centre, Selangor Darul Ehsan, Malaysia (reference: 012\/2022\/IND\/ER).","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable, no individual patient data are included in this manuscript.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"None reported.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"102"}}