The Fiscal Year 2019 (FY19) funding bill for the U.S. Department of Health and Human Services (HHS) that Congress passed in September includes $100,000 for a feasibility study, the first step in the development of a National Mesothelioma Patient Registry. This funding will be provided through the Centers for Disease Control (CDC) and specifically through the National Institute for Occupational Safety and Health (NIOSH).
The Mesothelioma Applied Research Foundation (Meso Foundation) is working in conjunction with the CDC to bring together stakeholders in the community to discuss issues such as approaches to establishing a registry, desired services, and to identify and address potential barriers. 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, MD.
The Meso Foundation and our community of patients, their families, bereaved, and others interested in eradicating mesothelioma have been advocating for a patient registry for mesothelioma since 2015. 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.
Why is a registry important?
The profound impact of patient registries has been demonstrated in other diseases (such as gastrointestinal stromal tumors, Gaucher’s disease, newborn screening for inborn errors of metabolism, interstitial pulmonary fibrosis, and muscular dystrophy) which, following their implementation, have seen an acceleration in treatment development and acceleration toward cures. Currently, there is no formal federal registry to keep track of mesothelioma patients’ demographics or other important information that could help identify gaps in current mesothelioma treatment.
The National Cancer Institute’s SEER (Surveillance, Epidemiology, and End Results) Program doesn’t benefit mesothelioma patients, as they typically pass away before data can be fully captured. In addition, CDC’s own most recent research findings report an alarming number of younger patients being diagnosed with this dreaded disease, often with no clear exposure to asbestos. The same report also identifies a worrisome overall rise in mesothelioma cases in the United States over the last 15 years.
The Mesothelioma Applied Research Foundation is the only 501(c)(3) nonprofit organization working to eradicate mesothelioma and end this national tragedy. Our programs include the funding of promising and peer-reviewed research, education, support, and advocacy. We strive to bring together thought-leaders in the field to identify the most direct path to a cure.
