At long last, plans are moving forward to establish a national mesothelioma patient registry in the United States. A key meeting of experts planning the registry will be held on Tuesday March 26, 2019 in Bethesda. The meeting will include panel presentations by mesothelioma experts from CDC and NIOSH, and will include a substantial opportunity for stakeholders to provide to suggestions and comments. The long hoped for registry is moving into place after years of efforts to obtain funding to to put a national registry in place, which already has been done for other rare diseases. The funding and registry are coming to fruition because of the tireless efforts of the Mesothelioma Applied Research Foundation, mesothelioma patients, and a wide range of advocates for those patients.
For the specifics about the meeting, including links to register, please see our February 19, 2019 blog post at the ToxicoGenomica blog.