April 18, 2019

NIOSH to Study Feasibility of Establishing a National Mesothelioma Registry

NIOSH seeks information on the feasibility of a registry designed to track cases of mesothelioma in the United States. A National Mesothelioma Registry would be intended to collect information that could be used to develop and improve standards of care and to identify gaps in mesothelioma prevention and treatment. According to the Federal Register, NIOSH has a strong interest in preventing mesothelioma because the most common risk factor for the disease is exposure to asbestos, an occupational hazard for many workers. NIOSH notes that treatments for mesothelioma are limited and survival is poor, with about half of the individuals who are diagnosed with mesothelioma dying within one year.

“A National Mesothelioma Registry could address the limitations of existing registries by reducing case reporting delays, collecting detailed information regarding risk and prognostic factors, and by engaging with researchers to better enable them to identify gaps in the current understanding of mesothelioma prevention and treatment and improve the standard of care for current and future patients,” the Federal Register notice reads.

NIOSH requests input on whether a registry would be an effective tool in improving mesothelioma patient care; what information should be collected by a mesothelioma registry; and what services a registry should provide to mesothelioma patients, clinicians, researchers, and other stakeholders. The agency also asks for advice regarding potential approaches to recruiting and enrolling mesothelioma patients in a registry as soon as possible after diagnosis.

The comment period for NIOSH’s request for information will be open until July 8, 2019. See the Federal Register notice for details and instructions on submitting comments.