Mesothelioma symposium focuses on development of patient registry

Woman Typing2 Mesothelioma symposium focuses on development of patient registryThe International Symposium on Malignant Mesothelioma, scheduled for March 25-27 in Bethesda, Maryland, gives families touched by mesothelioma a community where they can interact with clinicians, scientists and advocates as well as patients, caregivers, and other families. It also gives attendees a rare opportunity to learn more about the science of mesothelioma and advances in treatment directly from researchers and clinicians conducting these studies.

Mesothelioma is a rare form of cancer caused by asbestos exposure. It develops in the lining of the lungs, abdomen or chest. It can take years for the disease to develop. Once diagnosed, mesothelioma generally proves deadly within 12 to 24 months.

This year’s conference agenda focuses on the value of a patient registry to track mesothelioma patients’ demographics and other important information to help identify gaps in current treatment. There is no current registry of mesothelioma patients. Last September, Congress passed the Fiscal Year 2019 bill which includes $100,000 for the development of a National Mesothelioma Patient Registry.

Funds for the registry are 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 International Symposium on Malignant Mesothelioma is organized by the Mesothelioma Applied Research Foundation (Meso Foundation), a nonprofit collaboration of patients, families, physicians, advocates and researchers dedicated to eradicating mesothelioma. The organization calls the creation of a National Mesothelioma Patient Registry a huge step forward.

“This development marks a huge victory for the mesothelioma community as it lays down the groundwork for speedier advances in the treatment of this cancer – something mesothelioma patients desperately need,” the organizations said in an advocacy update.

For more information, visit the Meso Foundation website.

Mesothelioma Applied Research Foundation
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