An overview of existing mesothelioma registries worldwide, and the need for a US Registry

Our plain-English summary of An overview of existing mesothelioma registries worldwide, and the need for a US Registry, by M. van Gerwen, N. Alpert, R. Flores, et al (American Journal of Industrial Medicine, 2020).

The study

• Authors: M. van Gerwen, N. Alpert, R. Flores, E. Taioli
• Journal: American Journal of Industrial Medicine
• Published: 2020;63(2):115-120
• Type of article: Review
• Cited by: 28 articles, as counted by NIH iCite
• Read it: PubMed · Publisher

Abstract

The association between asbestos exposure, mainly in occupational settings, and malignant mesothelioma has been well established; this has prompted several countries to establish mesothelioma epidemiologic surveillance programs often at the request of national agencies. This review compares currently existing mesothelioma registries worldwide to develop a concept model for a US real-time case capture mesothelioma registry. Five countries were identified with a mesothelioma specific registry, including Italy, France, UK, Australia, and South Korea. All, except the UK, used interviews to collect exposure data. Linkage with the national death index was available or was in future plans for all registries. The registries have limited information on treatment, quality of life, and other patient-centered outcomes such as symptoms and pain management. To thoroughly collect exposure data, "real-time" enrollment is preferable; to maximize the capture of mesothelioma cases, optimal coverage, and a simplified consent process are needed.

© 2019 Wiley Periodicals, Inc.

In plain English

This article was a review. The authors compared mesothelioma registries around the world so they could build a concept model for a United States registry that captures new cases in real time. They found registries by searching PubMed and Google Scholar. They described five registries in detail. Italy's registry was created in 1993 and covers all 20 Italian regions. France's program began in 1998 and covers about 30% of the French population. The UK set up a national mesothelioma audit in 2014 and a pleural mesothelioma tissue bank, MesobanK, in 2012. Australia's registry was re-established in 2010, and South Korea's has run since 2001. Registries and databases in Turkey, Japan, South Africa, Belgium and Germany were described more briefly. All five main registries except the UK's used interviews to collect exposure information. The authors reported that the registries lacked patient-centered information such as treatment side effects, quality of life and pain management. The authors concluded that real-time enrollment is preferable for collecting exposure data. They added that good national coverage and a simple consent process are needed to capture as many cases as possible.

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: review of existing mesothelioma registries, based on published literature
• Who was studied: Mesothelioma registries found through PubMed and Google Scholar searches for 'mesothelioma' and 'registry'. Registries in Italy, France, the UK, Australia and South Korea were described in detail. Registries and databases in Turkey, Japan, South Africa, Belgium and Germany were described more briefly.
• Exposure: Not a study of exposure itself. The review looked at how registries collect information on occupational and environmental asbestos exposure, and on other exposures.
• Main results:
  • Italy's National Mesothelioma Registry (ReNaM), created in 1993, has regional centers in all 20 Italian regions, giving nationwide coverage.
  • France's National Program for Mesothelioma Surveillance, launched in 1998, records primary pleural tumors in 22 French districts, covering about 30% of the French population.
  • In the UK, mesothelioma was set up as a separate national audit in 2014. MesobanK, a bank of pleural mesothelioma tissue linked to anonymized clinical data, was created in 2012.
  • Australia's mesothelioma registry, re-established in 2010, collects exposure information through a postal questionnaire followed by a phone interview. It is linked every year to the National Death Index.
  • South Korea's surveillance system, in place since 2001, collects information only on mesothelioma cases confirmed by pathology.
  • Germany established the German mesothelioma register in 1973 to record all asbestos-related diseases.
  • Of the five main registries, all except the UK's used interviews to collect exposure data.
  • The registries lacked some patient-centered outcomes: treatment-related symptoms and side effects, quality of life, pain management and medications.
• The authors' conclusion: The authors concluded that real-time enrollment is preferable for collecting exposure data thoroughly. They also concluded that good national coverage and a simplified consent process are needed to capture as many mesothelioma cases as possible.

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, Asbestos Exposure, Quality of Life.

Related studies

• Exploring the usefulness of occupational exposure registries for surveillance: the case of the Ontario Asbestos Workers Registry (1986-2012) — A.J. Koné Pefoyo, L. Genesove, et al. (2014)
• Workshop summary: Potential usefulness and feasibility of a US National Mesothelioma Registry — K.J. Cummings, M.J. Becich, et al. (2020)
• Analyses of radiation and mesothelioma in the US Transuranium and Uranium Registries — H. Gibb, K. Fulcher, et al. (2013)
• USTUR Special Session Roundtable-US Transuranium and Uranium Registries (USTUR): A Five-decade Follow-up of Plutonium and Uranium Workers — S.Y. Tolmachev, M.J. Swint, et al. (2019)
• Feasibility of identifying high-risk occupations through tumor registries — M.D. Whorton, J. Schulman, et al. (1983)
• Mesothelioma registries in identifying asbestos hazards — A.D. McDonald (1979)

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