The establishment of a multiple myeloma clinical registry in the Asia-Pacific region: The Asia-Pacific Myeloma and Related Diseases Registry (APAC MRDR)
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...
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my.um.eprints.452522024-09-30T04:11:53Z http://eprints.um.edu.my/45252/ The establishment of a multiple myeloma clinical registry in the Asia-Pacific region: The Asia-Pacific Myeloma and Related Diseases Registry (APAC MRDR) Aoki, Naomi Chen, Pin-Yen Chen, Wenming Chng, Wee Joo Gan, Gin Gin Goh, Yeow Tee Hou, Jian Huang, Jeffrey Kim, Kihyun Lee, Je Jung Lu, Jin McQuilten, Zoe K. Min, Chang Ki Moore, Elizabeth Oliver, Laura Waters, Neil A. Wellard, Cameron Wood, Erica M. Yeh, Su-Peng Spencer, Andrew Investigators, APAC MRDR R Medicine 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. BMC 2024-05 Article PeerReviewed Aoki, Naomi and Chen, Pin-Yen and Chen, Wenming and Chng, Wee Joo and Gan, Gin Gin and Goh, Yeow Tee and Hou, Jian and Huang, Jeffrey and Kim, Kihyun and Lee, Je Jung and Lu, Jin and McQuilten, Zoe K. and Min, Chang Ki and Moore, Elizabeth and Oliver, Laura and Waters, Neil A. and Wellard, Cameron and Wood, Erica M. and Yeh, Su-Peng and Spencer, Andrew and Investigators, APAC MRDR (2024) The establishment of a multiple myeloma clinical registry in the Asia-Pacific region: The Asia-Pacific Myeloma and Related Diseases Registry (APAC MRDR). BMC Medical Research Methodology, 24 (1). p. 102. ISSN 1471-2288, DOI https://doi.org/10.1186/s12874-024-02227-0 <https://doi.org/10.1186/s12874-024-02227-0>. https://doi.org/10.1186/s12874-024-02227-0 10.1186/s12874-024-02227-0 |
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R Medicine Aoki, Naomi Chen, Pin-Yen Chen, Wenming Chng, Wee Joo Gan, Gin Gin Goh, Yeow Tee Hou, Jian Huang, Jeffrey Kim, Kihyun Lee, Je Jung Lu, Jin McQuilten, Zoe K. Min, Chang Ki Moore, Elizabeth Oliver, Laura Waters, Neil A. Wellard, Cameron Wood, Erica M. Yeh, Su-Peng Spencer, Andrew Investigators, APAC MRDR The establishment of a multiple myeloma clinical registry in the Asia-Pacific region: The Asia-Pacific Myeloma and Related Diseases Registry (APAC MRDR) |
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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. |
format |
Article |
author |
Aoki, Naomi Chen, Pin-Yen Chen, Wenming Chng, Wee Joo Gan, Gin Gin Goh, Yeow Tee Hou, Jian Huang, Jeffrey Kim, Kihyun Lee, Je Jung Lu, Jin McQuilten, Zoe K. Min, Chang Ki Moore, Elizabeth Oliver, Laura Waters, Neil A. Wellard, Cameron Wood, Erica M. Yeh, Su-Peng Spencer, Andrew Investigators, APAC MRDR |
author_facet |
Aoki, Naomi Chen, Pin-Yen Chen, Wenming Chng, Wee Joo Gan, Gin Gin Goh, Yeow Tee Hou, Jian Huang, Jeffrey Kim, Kihyun Lee, Je Jung Lu, Jin McQuilten, Zoe K. Min, Chang Ki Moore, Elizabeth Oliver, Laura Waters, Neil A. Wellard, Cameron Wood, Erica M. Yeh, Su-Peng Spencer, Andrew Investigators, APAC MRDR |
author_sort |
Aoki, Naomi |
title |
The establishment of a multiple myeloma clinical registry in the Asia-Pacific region: The Asia-Pacific Myeloma and Related Diseases Registry (APAC MRDR) |
title_short |
The establishment of a multiple myeloma clinical registry in the Asia-Pacific region: The Asia-Pacific Myeloma and Related Diseases Registry (APAC MRDR) |
title_full |
The establishment of a multiple myeloma clinical registry in the Asia-Pacific region: The Asia-Pacific Myeloma and Related Diseases Registry (APAC MRDR) |
title_fullStr |
The establishment of a multiple myeloma clinical registry in the Asia-Pacific region: The Asia-Pacific Myeloma and Related Diseases Registry (APAC MRDR) |
title_full_unstemmed |
The establishment of a multiple myeloma clinical registry in the Asia-Pacific region: The Asia-Pacific Myeloma and Related Diseases Registry (APAC MRDR) |
title_sort |
establishment of a multiple myeloma clinical registry in the asia-pacific region: the asia-pacific myeloma and related diseases registry (apac mrdr) |
publisher |
BMC |
publishDate |
2024 |
url |
http://eprints.um.edu.my/45252/ https://doi.org/10.1186/s12874-024-02227-0 |
_version_ |
1811682109161472000 |
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13.2014675 |