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An overview of existing mesothelioma registries worldwide, and the need for a US Registry
Author(s) -
Gerwen Maaike,
Alpert Naomi,
Flores Raja,
Taioli Emanuela
Publication year - 2020
Publication title -
american journal of industrial medicine
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.7
H-Index - 104
eISSN - 1097-0274
pISSN - 0271-3586
DOI - 10.1002/ajim.23069
Subject(s) - mesothelioma , medicine , asbestos , environmental health , cancer registry , medical emergency , family medicine , epidemiology , pathology , materials science , metallurgy
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.