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Mesothelioma Registry Could Identify Gaps, Improve Standards of Care

The National Institute for Occupational Safety and Health (NIOSH), within the Centers for Disease Control and Prevention (CDC), has announced the opening of docket to obtain information on the feasibility of a mesothelioma registry that would track mesothelioma cases in the U.S. The docket is also open to recommendations from the public on enrollment, data collection, confidentiality, and registry maintenance.

Mesothelioma is one of the rarest and most difficult cancers to treat and there is no cure for the disease. According to WorkersCompensation.com, “the NIOSH has a strong interest in preventing mesothelioma and helping people with the disease, since the most common known cause is exposure to asbestos, a dangerous occupational hazard for many workers.”

Currently, information about new mesothelioma cases is reported to state (or local) cancer registries. The information is then submitted annually to the CDC or the National Cancer Institute (NCI), and then compiled by the CDC in the U.S. Cancer Statistics database. However, reports WC.com, “existing cancer registries collect only limited information about potential risk factors and issues occurring over time, such as treatment complications. In addition to the limitations on the scope of existing surveillance systems, it may take six months or more from the time of diagnosis until mesothelioma cases are initially reported to a cancer registry, and then another 1-2 years to be reported in U.S. Cancer Statistics.”

Around half of those diagnosed with mesothelioma die within one year, so “in order to be of benefit to registrants, a registry would need to develop a case-finding methodology to enroll registrants as soon as possible after diagnosis to allow timely access to contemporary state-of-the-art therapy and clinical trials.” Reports suggest that, “many mesothelioma patients do not receive this level of care.”

Ideally, this new case-finding methodology would be national in scope and identify most people diagnosed with mesothelioma. This would allow researchers to use this current data to determine demographics, risk factors, incidence, and prevalence as required by the 2019 Consolidated Appropriations Act.  

“A National Mesothelioma Registry could address the limitations of existing registries by reducing case reporting delays and collecting detailed information regarding risk and prognostic factors,” reports WC.com. A registry could also reduce delays “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.”

What You Can Do to Help

Interested parties may submit comments to the Federal eRulemaking Portal: Regulations.gov, or send a hard copy to the NIOSH Docket Office, Robert A. Taft Laboratories, MS-C34, 1090 Tusculum Avenue, Cincinnati, OH 45226. Written submissions must include the agency name (CDC, HHS) and docket number (CDC-2019-0029; NIOSH-327).

If you have been exposed to asbestos, see our doctor right away. Although there is no cure for mesothelioma, early detection could lead to better treatment options and outcomes. See your doctor to assess your risk today.

 

Sources

Gelman, John L. “CDC has requested comments for the feasibility of a mesothelioma registry.” WorkersCompensation.com. WorkersCompensation.com, LLC., 19 Apr. 2019. Web. 22 Feb. 2019.

“U.S. Cancer Statistics Data Visualizations Tool.” Centers for Disease Control and Prevention (CDC). U.S. Department of Heal