Workshop summary: Potential usefulness and feasibility of a US National Mesothelioma Registry |
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| Authors: | Kristin J Cummings MD MPH Michael J Becich MD PhD David J Blackley DrPH Dennis Deapen DrPH Robert Harrison MD MPH Raffit Hassan MD S Jane Henley MSPH Mary Hesdorffer NP D Kevin Horton DrPH Jacek M Mazurek MD PhD Harvey I Pass MD Emanuela Taioli MD PhD Xiao-Cheng Wu MD MPH Marjorie G Zauderer MD MS David N Weissman MD |
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| Institution: | 1. Respiratory Health Division, National Institute for Occupational Safety and Health, Centers for Disease Control and Prevention, Morgantown, West Virginia;2. Department of Biomedical Informatics, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania;3. Los Angeles Cancer Surveillance Program, Department of Preventive Medicine, University of Southern California Keck School of Medicine, Los Angeles, California;4. Occupational Health Branch, California Department of Public Health, Richmond, California;5. Thoracic and GI Malignancies Branch, National Cancer Institute, Bethesda, Maryland;6. Division of Cancer Prevention and Control, National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention, Atlanta, Georgia;7. Mesothelioma Applied Research Foundation, Washington, District of Columbia;8. Division of Toxicology and Human Health Sciences, Agency for Toxic Substances and Disease Registry, Centers for Disease Control and Prevention, Atlanta, Georgia;9. Department of Cardiothoracic Surgery, New York University Langone Medical Center, New York, New York;10. Institute for Translational Epidemiology and Tisch Cancer Institute, Icahn School of Medicine at Mount Sinai, New York, New York;11. Louisiana Tumor Registry, Department of Epidemiology, School of Public Health, Louisiana State University Health Sciences Center, New Orleans, Louisiana;12. Thoracic Oncology Service, Memorial Sloan Kettering Cancer Center, New York, New York |
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| Abstract: | The burden and prognosis of malignant mesothelioma in the United States have remained largely unchanged for decades, with approximately 3200 new cases and 2400 deaths reported annually. To address care and research gaps contributing to poor outcomes, in March of 2019 the Mesothelioma Applied Research Foundation convened a workshop on the potential usefulness and feasibility of a national mesothelioma registry. The workshop included formal presentations by subject matter experts and a moderated group discussion. Workshop participants identified top priorities for a registry to be (a) connecting patients with high-quality care and clinical trials soon after diagnosis, and (b) making useful data and biospecimens available to researchers in a timely manner. Existing databases that capture mesothelioma cases are limited by factors such as delays in reporting, deidentification, and lack of exposure information critical to understanding as yet unrecognized causes of disease. National disease registries for amyotrophic lateral sclerosis (ALS) in the United States and for mesothelioma in other countries, provide examples of how a registry could be structured to meet the needs of patients and the scientific community. Small-scale pilot initiatives should be undertaken to validate methods for rapid case identification, develop procedures to facilitate patient access to guidelines-based standard care and investigational therapies, and explore approaches to data sharing with researchers. Ultimately, federal coordination and funding will be critical to the success of a National Mesothelioma Registry in improving mesothelioma outcomes and preventing future cases of this devastating disease. |
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| Keywords: | asbestos mesothelioma registry |
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