The first step toward creating a national mesothelioma registry has been taken by The National Institute for Occupational Safety and Health (NIOSH). The agency, which is part of the Centers for Disease Control and Prevention (CDC), published a Request for Information in the Federal Register early last month. Its purpose is to seek input about ways to set up and operate the registry.
The registry would be used to collect data that would help track cases of mesothelioma in this country. It would be designed to create and expand care standards, while identifying problems with current mesothelioma prevention and care methods. NIOSH is soliciting suggestions and information on ways to enroll participants, preserve confidentiality, and collect data, along with ongoing registry maintenance.
Mesothelioma affects the human body’s lining tissue on the lungs, chest, and abdomen. It is most often caused from asbestos exposure. Unfortunately, there are not many treatments for mesothelioma, and the prognosis is usually poor. Asbestos is a serious occupational hazard that many workers have been exposed to, and NIOSH’s goal is to help mesothelioma patients and even eradicate it in the future.
Like other cancers, mesothelioma is a reportable disease, and information about new cases is reported to local and state cancer registries. This is then sent to the CDC and other agencies and gathered into the U.S. Cancer Statistics database. This information is limited and does not include details about treatment complications and risk factors.
Time is also an issue, since it can take more than six months for a case to get to a cancer registry, and up to another two years to be published in the U.S. Cancer Statistics. About 50 percent of diagnosed patients die within a year. A registry could benefit them if the information, clinical trials, and modern therapies were initiated sooner, with possible better outcomes.
There are several questions to be answered, and the first asks if a registry would be an effective way to help mesothelioma patients, and why. Other questions seek information about clinical, basic, and epidemiological mesothelioma research. The registry also poses questions about ways to recruit and enroll patients in a timely fashion, as well as the type of information that should be collected. Areas of service, access to information, and confidentiality are also topics to be considered. The last questions focus on the types of organizations that should manage the registry, and suggested resources to keep it running, such as a data center, clinical sites, and health departments.
If you or someone you care for is suffering from asbestos exposure, the Philadelphia mesothelioma lawyers at Brookman, Rosenberg, Brown & Sandler can help. Call us at 215-569-4000 or complete an online form for a free consultation. Located in Philadelphia, we serve clients throughout New Jersey and Pennsylvania, including Delaware County, Chester County, and Philadelphia County.