Review of Registries, Databases and Biobanks for Surveillance and Research on Mesothelioma

Mesothelioma is considered a signal tumour of asbestos exposure. Many countries have imposed asbestos bans or effectively no longer use asbestos, but a small number continue to import or mine it. Controls are generally much improved, with resulting plateauing or decreasing rates in many countries, but the effect of past exposures and ongoing exposure through in situ asbestos in buildings and environmental sources results in continued cases of mesothelioma globally. Improper disposal of asbestos is also an obstacle to managing and reducing asbestos exposure. Data on mesothelioma are recorded by mesothelioma registries, population-based cancer registries, healthcare databases, biobanks and online epidemiological data sources. Data from the various sources are significantly different and generally not directly comparable. Mesothelioma registries and population-based cancer registries are excellent resources for epidemiological and statistical data but are typically not linked to clinical data or biospecimen collections. Integrating biospecimen collections with linked clinical data creates rich real-world datasets that enhance research quality, enable data-driven discoveries, and support future translational research. The diagnosis of mesothelioma can be challenging, and data recording is not always accurate or complete across centres. Inconsistencies in data can affect epidemiological studies and undermine efforts to improve policies that affect individuals with mesothelioma and prevent further occurrence of mesothelioma. Linkage between mesothelioma registries, cancer registries, biobanks and other health-related databases will benefit researchers and allow access for further research initiatives. Closer collaboration between registries offers benefits for countries that lack diagnostic and healthcare infrastructure. Established mesothelioma registries can serve as valuable models for countries developing national surveillance systems by sharing expertise in case ascertainment, exposure assessment, registry governance and epidemiological methods. This study is a narrative review based on a non-systematic search of the published literature. This review of mesothelioma-related data resources and biospecimen collections serves as a foundation for enhancing collaboration and knowledge sharing in the fight against mesothelioma.