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

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

Which ICD‐9 codes were assigned for malignant mesothelioma in the mortality data in the United States before the ICD‐10 was introduced?

“…1 ICD-9 code 199 "Malignant neoplasm without specification of site," 162.9 "Malignant neoplasm of trachea, bronchus, and lung, unspecified," 163 "Malignant neoplasm of pleura," 158.9 "Malignant neoplasm of retroperitoneum and peritoneum, unspecified." 2 Each death in double-coded mortality file was coded according to both ICD-9 and ICD-10.…”

“…We first identified decedents in which the UCOD was ICD-10 code C45 and then displayed the distribution of the corresponding double-coded ICD-9 codes. We then calculated DR and T A B L E 1 Number of deaths and detection rates (%) of ICD-9 codes in which the corresponding ICD-10 code was C45 1 (malignant mesothelioma) according to 1996 double-coded mortality file 2 In this cross-sectional study, we used descriptive statistics (percentage) to present the results. We also displayed a graphic expression of relative size of a number of all deaths of ICD-9 codes as proxy measures of MM and relative size of a number of deaths in which the corresponding ICD-10 code was C45.…”

“…Malignant mesothelioma (MM) is a sentinel health event indicating past occupational and environmental exposure to asbestos and the latency period ranged from 20 to 40 years. [1][2][3] As MM is rare and fatal (survival in most cases is only about 1 year), 4,5 mortality rate is, therefore, a good proxy measure of incidence rate. The National Institute for Occupational Safety and Health (NIOSH) regularly extracts information from mortality data for surveillance of occupational diseases.…”

“…Malignant mesothelioma (MM) is a sentinel health event indicating past occupational and environmental exposure to asbestos and the latency period ranged from 20 to 40 years 1–3 . As MM is rare and fatal (survival in most cases is only about 1 year), 4,5 mortality rate is, therefore, a good proxy measure of incidence rate.…”

Multiple institutions’ research findings using the National Mesothelioma Virtual Bank

“…With so many years of practical experience, the team leaders of NMVB actively joined a nationwide workshop discussing the potential usefulness and feasibility of national mesothelioma registry. 31 Moving forward, the NMVB is working with an epidemiology and occupational health expert and gain knowledge through the CDC NIOSH to enhance the investigation of occupational history and the exposure that may contribute to mesothelioma.…”