The U.S. Department of Health and Human Services (HHS) is implementing the first formal national registry to track mesothelioma patients’ demographics and other important information to help identify gaps in current treatment for the deadly asbestos-related disease.
Congress passed the Fiscal Year 2019 bill in September, which includes $100,000 for the development of a National Mesothelioma Patient Registry. Funding is provided through the Centers for Disease Control and Prevention (CDC) National Institute for Occupational Safety and Health (NIOSH), a federal agency charged with conducting research and making recommendations for the prevention of work-related injury and illness.
The Mesothelioma Applied Research Foundation (Meso Foundation) is tasked by the CDC to gather mesothelioma stakeholders to begin planning for the registry.
“To this end, the foundation has begun to assemble a task force set to meet in conjunction with our International Symposium on Malignant Mesothelioma, which will be held on March 25, 2019, in Bethesda, Maryland,” the nonprofit organization said in an advocacy update.
Mesothelioma, a rare but deadly form of cancer that develops in the lining of the lungs, abdomen or chest, can take decades to develop. Once diagnosed, it can prove fatal within a year or two.
Because mesothelioma typically kills before data can be full captured, the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program doesn’t benefit mesothelioma patients. Similar registries for other serious diseases, once established, have led to an acceleration of treatment development.
“The Meso Foundation and our community of patients, their families, bereaved, and others have been interested in eradicating mesothelioma since 2015,” the group said in its advocacy update. “This development marks a huge victory for the mesothelioma community as it lays down the ground work for speedier advances in the treatment of this cancer – something mesothelioma patients desperately need.”
Source: Mesothelioma Applied Research Foundation