Evidence map›Paper›PMID 38698331›Full record

ArticleBMC medical research methodology2024

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

Naomi Aoki, Pin-Yen Chen, Wenming Chen, Wee Joo Chng, Gin Gin Gan, Yeow Tee Goh, Jian Hou, Jeffrey Huang, Kihyun Kim, Je Jung Lee and 11 more

Abstract read
In one paragraph

Article in BMC medical research methodology, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed.

  1. Review
  2. Article
  3. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

21 authors.

Naomi AokiSchool of Public Health and Preventive Medicine, Monash University, Melbourne, Australia.
Pin-Yen ChenSchool of Public Health and Preventive Medicine, Monash University, Melbourne, Australia.
Wenming ChenBeijing Chaoyang Hospital, Beijing, China.
Wee Joo ChngNational University Cancer Institute, Singapore, Singapore.
Gin Gin GanUniversiti Malaya Medical Centre, Selangor, Malaysia.
Yeow Tee GohSingapore General Hospital, Singapore, Singapore.
Jian HouRenji Hospital, Shanghai, China.
Jeffrey HuangNational Taiwan University Hospital, Taipei City, Taiwan.
Kihyun KimSungkyunkwan University School of Medicine, Samsung Medical Center, Seoul, Korea.
Je Jung LeeChonnam National University Hospital, Gwangju, Korea.
Jin LuPeking University People's Hospital, Beijing, China.
Zoe K McQuiltenSchool of Public Health and Preventive Medicine, Monash University, Melbourne, Australia.
Chang Ki MinSeoul St Mary's Hospital, Seoul, Korea.
Elizabeth MooreSchool of Public Health and Preventive Medicine, Monash University, Melbourne, Australia.
Laura OliverSchool of Public Health and Preventive Medicine, Monash University, Melbourne, Australia.
Neil A WatersSchool of Public Health and Preventive Medicine, Monash University, Melbourne, Australia.
Cameron WellardSchool of Public Health and Preventive Medicine, Monash University, Melbourne, Australia.
Erica M WoodSchool of Public Health and Preventive Medicine, Monash University, Melbourne, Australia. sphpm.apacmrdr@monash.edu.
Su-Peng YehChina Medical University Hospital, Taichung City, Taiwan.
Andrew SpencerThe Alfred Hospital, Melbourne, Australia.
APAC MRDR Investigators

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundMultiple 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.

methodsThe 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.

resultsOver 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.

conclusionThe 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.

Indexed as

Multiple MyelomaRegistriesAsiaFemaleHumansMalaysiaMaleMiddle AgedProspective StudiesRepublic of KoreaSingaporeTaiwanClinical registryEpidemiologyMultiple myelomaReal-world data

Identifiers

PMID38698331
PMCPMC11067098

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.