Workshop summary: Potential usefulness and feasibility of a US National Mesothelioma Registry

Our plain-English summary of Workshop summary: Potential usefulness and feasibility of a US National Mesothelioma Registry, by K.J. Cummings, M.J. Becich, D.J. Blackley, et al (American Journal of Industrial Medicine, 2020).

The study

• Authors: K.J. Cummings, M.J. Becich, D.J. Blackley, D. Deapen, R. Harrison, R. Hassan, S.J. Henley, M. Hesdorffer, D.K. Horton, J.M. Mazurek, H.I. Pass, E. Taioli, X.C. Wu, M.G. Zauderer, D.N. Weissman
• Journal: American Journal of Industrial Medicine
• Published: 2020;63(2):105-114
• Cited by: 11 articles, as counted by NIH iCite
• Read it: PubMed · Publisher · Free full text

Abstract

The burden and prognosis of malignant mesothelioma in the United States have remained largely unchanged for decades, with approximately 3200 new cases and 2400 deaths reported annually. To address care and research gaps contributing to poor outcomes, in March of 2019 the Mesothelioma Applied Research Foundation convened a workshop on the potential usefulness and feasibility of a national mesothelioma registry. The workshop included formal presentations by subject matter experts and a moderated group discussion. Workshop participants identified top priorities for a registry to be (a) connecting patients with high-quality care and clinical trials soon after diagnosis, and (b) making useful data and biospecimens available to researchers in a timely manner. Existing databases that capture mesothelioma cases are limited by factors such as delays in reporting, deidentification, and lack of exposure information critical to understanding as yet unrecognized causes of disease. National disease registries for amyotrophic lateral sclerosis (ALS) in the United States and for mesothelioma in other countries, provide examples of how a registry could be structured to meet the needs of patients and the scientific community. Small-scale pilot initiatives should be undertaken to validate methods for rapid case identification, develop procedures to facilitate patient access to guidelines-based standard care and investigational therapies, and explore approaches to data sharing with researchers. Ultimately, federal coordination and funding will be critical to the success of a National Mesothelioma Registry in improving mesothelioma outcomes and preventing future cases of this devastating disease.

© 2019 Wiley Periodicals, Inc.

In plain English

This article was a commentary summarizing a one-day workshop held in Bethesda, Maryland, on 26 March 2019, convened by the Mesothelioma Applied Research Foundation. Experts in mesothelioma and disease surveillance gave presentations and held a moderated discussion on whether a US national mesothelioma registry would be useful and feasible. It was not an original study of patients or of asbestos exposure. As background from national data sources, the authors reported 3209 new mesothelioma cases and 2404 mesothelioma deaths in the United States in 2015. Participants identified two top priorities for a registry. The first was connecting patients with high-quality care and clinical trials soon after diagnosis. The second was making data and biospecimens available to researchers in a timely way. Existing databases were described as limited by reporting delays, de-identification and lack of exposure information. Participants also raised concern that legal issues around asbestos compensation might discourage patients from sharing exposure information or samples. The authors concluded that a registry would be a useful resource whose feasibility depends on rapid case identification and adequate funding. They recommended starting with small pilot projects.

We wrote this plain-English summary from the full article with the help of AI, and a second AI model checked each sentence against the article. It is not the authors' wording; the abstract and the article are their own account.

What the study did and found

• Design: Commentary summarizing a workshop (expert presentations and moderated group discussion), supplemented by background from the literature and national data sources; not an original research study
• Who was studied: Experts in mesothelioma and disease surveillance attending a 1-day workshop convened by the Mesothelioma Applied Research Foundation in Bethesda, Maryland, on 26 March 2019; number of participants not stated
• Main results:
  • Workshop participants identified two top priorities for a registry: (a) connecting patients with high-quality care and clinical trials soon after diagnosis and (b) making useful data and biospecimens available to researchers in a timely manner
  • Existing databases that capture mesothelioma cases were described as limited by delays in reporting, de-identification, and lack of exposure information
  • National US Cancer Statistics data reflect cases diagnosed 2 to 3 years earlier
  • Background figure from national data sources (not generated by this article): in 2015 there were 3209 new mesothelioma cases and 2404 mesothelioma deaths reported in the United States
  • Workshop participants expressed concern that legal issues surrounding asbestos exposure and mesothelioma might hinder research, for example by discouraging patients from answering exposure questions or providing samples. The authors noted this concern is not well documented in the literature.
  • Drawing on the National ALS Registry experience, the authors emphasized starting with small-scale pilot initiatives
• The authors' conclusion: The authors concluded that a national mesothelioma registry would be a useful resource for addressing care and research gaps. They considered feasibility suggested by an existing US rare disease registry and by mesothelioma registries in other countries, but dependent on rapid case identification and adequate funding.

Topics

The National Library of Medicine indexes this study under subjects our site covers: Mesothelioma.

Medical terms in this study, explained in our Lexicon: Mesothelioma, Prognosis, Malignant Mesothelioma, Clinical Trial.

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