{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,13]],"date-time":"2026-05-13T17:19:11Z","timestamp":1778692751910,"version":"3.51.4"},"reference-count":68,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2019,11,19]],"date-time":"2019-11-19T00:00:00Z","timestamp":1574121600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100001755","name":"Mesothelioma Applied Research Foundation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100001755","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000125","name":"National Institute for Occupational Safety and Health","doi-asserted-by":"publisher","award":["CDC NIOSH 1\u2010U19\u2010OH009077"],"award-info":[{"award-number":["CDC NIOSH 1\u2010U19\u2010OH009077"]}],"id":[{"id":"10.13039\/100000125","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000030","name":"Centers for Disease Control and Prevention","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000030","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["American J Industrial Med"],"published-print":{"date-parts":[[2020,2]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>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\u2010quality 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\u2010scale pilot initiatives should be undertaken to validate methods for rapid case identification, develop procedures to facilitate patient access to guidelines\u2010based 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.<\/jats:p>","DOI":"10.1002\/ajim.23062","type":"journal-article","created":{"date-parts":[[2019,11,19]],"date-time":"2019-11-19T19:13:45Z","timestamp":1574190825000},"page":"105-114","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":15,"title":["Workshop summary: Potential usefulness and feasibility of a US National Mesothelioma Registry"],"prefix":"10.1002","volume":"63","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5422-9199","authenticated-orcid":false,"given":"Kristin J.","family":"Cummings","sequence":"first","affiliation":[{"name":"Respiratory Health Division, National Institute for Occupational Safety and Health Centers for Disease Control and Prevention  Morgantown West Virginia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michael J.","family":"Becich","sequence":"additional","affiliation":[{"name":"Department of Biomedical Informatics University of Pittsburgh School of Medicine  Pittsburgh Pennsylvania"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"David J.","family":"Blackley","sequence":"additional","affiliation":[{"name":"Respiratory Health Division, National Institute for Occupational Safety and Health Centers for Disease Control and Prevention  Morgantown West Virginia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Dennis","family":"Deapen","sequence":"additional","affiliation":[{"name":"Los Angeles Cancer Surveillance Program, Department of Preventive Medicine University of Southern California Keck School of Medicine  Los Angeles California"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Robert","family":"Harrison","sequence":"additional","affiliation":[{"name":"Occupational Health Branch California Department of Public Health  Richmond California"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Raffit","family":"Hassan","sequence":"additional","affiliation":[{"name":"Thoracic and GI Malignancies Branch National Cancer Institute  Bethesda Maryland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2420-306X","authenticated-orcid":false,"given":"S. Jane","family":"Henley","sequence":"additional","affiliation":[{"name":"Division of Cancer Prevention and Control, National Center for Chronic Disease Prevention and Health Promotion Centers for Disease Control and Prevention  Atlanta Georgia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mary","family":"Hesdorffer","sequence":"additional","affiliation":[{"name":"Mesothelioma Applied Research Foundation  Washington District of Columbia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"D. Kevin","family":"Horton","sequence":"additional","affiliation":[{"name":"Division of Toxicology and Human Health Sciences, Agency for Toxic Substances and Disease Registry Centers for Disease Control and Prevention  Atlanta Georgia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jacek M.","family":"Mazurek","sequence":"additional","affiliation":[{"name":"Respiratory Health Division, National Institute for Occupational Safety and Health Centers for Disease Control and Prevention  Morgantown West Virginia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Harvey I.","family":"Pass","sequence":"additional","affiliation":[{"name":"Department of Cardiothoracic Surgery New York University Langone Medical Center  New York New York"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Emanuela","family":"Taioli","sequence":"additional","affiliation":[{"name":"Institute for Translational Epidemiology and Tisch Cancer Institute Icahn School of Medicine at Mount Sinai  New York New York"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Xiao\u2010Cheng","family":"Wu","sequence":"additional","affiliation":[{"name":"Louisiana Tumor Registry, Department of Epidemiology, School of Public Health Louisiana State University Health Sciences Center  New Orleans Louisiana"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Marjorie G.","family":"Zauderer","sequence":"additional","affiliation":[{"name":"Thoracic Oncology Service Memorial Sloan Kettering Cancer Center  New York New York"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"David N.","family":"Weissman","sequence":"additional","affiliation":[{"name":"Respiratory Health Division, National Institute for Occupational Safety and Health Centers for Disease Control and Prevention  Morgantown West Virginia"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2019,11,19]]},"reference":[{"key":"e_1_2_12_2_1","volume-title":"U.S. Cancer Statistics Data Visualizations Tool","author":"U.S. Cancer Statistics Working Group"},{"key":"e_1_2_12_3_1","doi-asserted-by":"publisher","DOI":"10.2147\/CLEP.S105396"},{"key":"e_1_2_12_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.athoracsur.2017.09.036"},{"key":"e_1_2_12_5_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.291.22.2720"},{"key":"e_1_2_12_6_1","doi-asserted-by":"publisher","DOI":"10.5858\/arpa.2017-0365-RA"},{"key":"e_1_2_12_7_1","doi-asserted-by":"publisher","DOI":"10.1038\/ng.912"},{"key":"e_1_2_12_8_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1470-2045(13)70257-2"},{"key":"e_1_2_12_9_1","unstructured":"National Center for Health Statistics. National Vital Statistics System 1999\u20102017.https:\/\/wonder.cdc.gov\/. Accessed 14 May 2019."},{"key":"e_1_2_12_10_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0145039"},{"key":"e_1_2_12_11_1","doi-asserted-by":"publisher","DOI":"10.21037\/jtd.2018.04.63"},{"key":"e_1_2_12_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.athoracsur.2019.03.052"},{"issue":"3","key":"e_1_2_12_13_1","first-page":"889","article-title":"Association of patient comorbid conditions with cancer clinical trial participation","volume":"108","author":"Unger JM","year":"2019","journal-title":"JAMA Oncol."},{"key":"e_1_2_12_14_1","doi-asserted-by":"publisher","DOI":"10.1177\/0272989X13497264"},{"key":"e_1_2_12_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.lungcan.2018.07.007"},{"key":"e_1_2_12_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jtho.2018.08.2036"},{"key":"e_1_2_12_17_1","unstructured":"National Cancer Institute. Clinical trials information for patients and caregivers.https:\/\/www.cancer.gov\/about\u2010cancer\/treatment\/clinical\u2010trialsAccessed 9 October 2019."},{"key":"e_1_2_12_18_1","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2016.68.3672"},{"key":"e_1_2_12_19_1","doi-asserted-by":"publisher","DOI":"10.1021\/jm400842x"},{"key":"e_1_2_12_20_1","doi-asserted-by":"publisher","DOI":"10.1097\/JTO.0000000000000471"},{"key":"e_1_2_12_21_1","doi-asserted-by":"publisher","DOI":"10.1158\/1078-0432.CCR-15-1130"},{"key":"e_1_2_12_22_1","doi-asserted-by":"publisher","DOI":"10.21037\/jtd.2018.03.33"},{"key":"e_1_2_12_23_1","doi-asserted-by":"publisher","DOI":"10.1093\/carcin\/bgz004"},{"key":"e_1_2_12_24_1","doi-asserted-by":"publisher","DOI":"10.1097\/JTO.0000000000000506"},{"key":"e_1_2_12_25_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jtho.2016.04.028"},{"key":"e_1_2_12_26_1","doi-asserted-by":"publisher","DOI":"10.15585\/mmwr.mm6254a1"},{"key":"e_1_2_12_27_1","doi-asserted-by":"publisher","DOI":"10.15585\/mmwr.mm6254a3"},{"key":"e_1_2_12_28_1","unstructured":"North American Association of Central Cancer Registries (NAACCR). Version 18 Data Standards and Data Dictionary.https:\/\/www.naaccr.org\/data\u2010standards\u2010data\u2010dictionary\/. Accessed 13 June 2019."},{"key":"e_1_2_12_29_1","doi-asserted-by":"publisher","DOI":"10.1177\/003335491613100119"},{"key":"e_1_2_12_30_1","unstructured":"Caroline Pryce Walker Conquer Childhood Cancer Act of 2008.Public Law 110\u2010285. 122 STAT.2628\u20102631."},{"key":"e_1_2_12_31_1","unstructured":"Centers for Disease Control and Prevention. Public Health Information Network Messaging System.https:\/\/www.cdc.gov\/phin\/tools\/phinms\/index.html. Accessed 14 May 2019."},{"key":"e_1_2_12_32_1","doi-asserted-by":"publisher","DOI":"10.4103\/jpi.jpi_38_18"},{"key":"e_1_2_12_33_1","doi-asserted-by":"publisher","DOI":"10.1158\/0008-5472.CAN-15-1973"},{"key":"e_1_2_12_34_1","unstructured":"California Cancer Registry.Cancer rates.https:\/\/www.cancer\u2010rates.info\/ca\/. Accessed 22 March 2019."},{"key":"e_1_2_12_35_1","unstructured":"California Cancer Registry.Implementing California AB 2325.https:\/\/www.ccrcal.org\/submitdata\/reporting\u2010by\u2010pathologists\/implementing\u2010ab\u20102325\/. Accessed 13 June 2019."},{"key":"e_1_2_12_36_1","unstructured":"National Mesothelioma Virtual Bank.https:\/\/www.mesotissue.org\/. Accessed 14 May 2019."},{"key":"e_1_2_12_37_1","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2407-8-236"},{"key":"e_1_2_12_38_1","doi-asserted-by":"publisher","DOI":"10.4103\/2153-3539.68314"},{"key":"e_1_2_12_39_1","doi-asserted-by":"publisher","DOI":"10.1155\/2013\/765748"},{"key":"e_1_2_12_40_1","doi-asserted-by":"publisher","DOI":"10.12688\/f1000research.15512.2"},{"key":"e_1_2_12_41_1","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2407-8-91"},{"key":"e_1_2_12_42_1","unstructured":"National Cancer Institute. SEER\u2010Medicare Linked Database.https:\/\/healthcaredelivery.cancer.gov\/seermedicare\/. Accessed 14 May 2019."},{"key":"e_1_2_12_43_1","unstructured":"Agency for Healthcare Research and Quality. All\u2010Payer Claims Databases.https:\/\/www.ahrq.gov\/professionals\/quality\u2010patient\u2010safety\/quality\u2010resources\/apcd\/index.html. Accessed 13 June 2019."},{"key":"e_1_2_12_44_1","unstructured":"New York State Department of Health. Statewide Planning and Research Cooperative System (SPARCS).https:\/\/www.health.ny.gov\/statistics\/sparcs\/. Accessed 14 May 2019."},{"key":"e_1_2_12_45_1","unstructured":"Society of Thoracic Surgeons. General Thoracic Surgery Database.https:\/\/www.sts.org\/registriesresearch\u2010center\/sts\u2010national\u2010database\/sts\u2010general\u2010thoracic\u2010surgery\u2010database. Accessed 13 June 2019."},{"key":"e_1_2_12_46_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.annpat.2014.01.009"},{"key":"e_1_2_12_47_1","doi-asserted-by":"publisher","DOI":"10.1136\/oem.2005.023200"},{"key":"e_1_2_12_48_1","doi-asserted-by":"publisher","DOI":"10.1007\/s004200100240"},{"key":"e_1_2_12_49_1","doi-asserted-by":"publisher","DOI":"10.1002\/ijc.26229"},{"key":"e_1_2_12_50_1","doi-asserted-by":"publisher","DOI":"10.1136\/oemed-2016-103652"},{"issue":"5","key":"e_1_2_12_51_1","first-page":"336","article-title":"National epidemiological surveillance systems of mesothelioma cases","volume":"40","author":"Ferrante P","year":"2016","journal-title":"Epidemiol Prev"},{"key":"e_1_2_12_52_1","doi-asserted-by":"publisher","DOI":"10.15585\/mmwr.mm6746a1"},{"key":"e_1_2_12_53_1","unstructured":"ALS Registry Act of 2008. Public Law 110\u2010373. 122 STAT. 4047\u20104050."},{"key":"e_1_2_12_54_1","unstructured":"Agency for Toxic Substances and Disease Registry. National Amyotrophic Lateral Sclerosis (ALS) Registry.https:\/\/www.cdc.gov\/als\/Default.html. Accessed 14 May 2019."},{"key":"e_1_2_12_55_1","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2017.76.6394"},{"key":"e_1_2_12_56_1","doi-asserted-by":"publisher","DOI":"10.1158\/1535-7163.MCT-09-0138"},{"key":"e_1_2_12_57_1","doi-asserted-by":"publisher","DOI":"10.1089\/hum.2009.088"},{"key":"e_1_2_12_58_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcv.2009.11.019"},{"key":"e_1_2_12_59_1","doi-asserted-by":"publisher","DOI":"10.1002\/ijc.25285"},{"key":"e_1_2_12_60_1","doi-asserted-by":"publisher","DOI":"10.1158\/1078-0432.CCR-14-1233"},{"key":"e_1_2_12_61_1","doi-asserted-by":"publisher","DOI":"10.1158\/1535-7163.MCT-14-0972"},{"key":"e_1_2_12_62_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jmoldx.2016.07.011"},{"key":"e_1_2_12_63_1","unstructured":"Centers for Disease Control and Prevention. National Amyotrophic Lateral Sclerosis Registry Papers.https:\/\/www.cdc.gov\/als\/ALSPapers.html. Accessed 28 June 2019."},{"key":"e_1_2_12_64_1","doi-asserted-by":"publisher","DOI":"10.2105\/AJPH.2015.302642"},{"key":"e_1_2_12_65_1","unstructured":"Agency for Toxic Substances and Disease Registry. Exposure and Health Registries.https:\/\/www.atsdr.cdc.gov\/publications_health_registries.html. Accessed 14 May 2019."},{"key":"e_1_2_12_66_1","unstructured":"Centers for Disease Control and Prevention. National Program of Cancer Registries (NPCR).https:\/\/www.cdc.gov\/cancer\/npcr\/index.htm. Accessed 14 May 2019."},{"key":"e_1_2_12_67_1","unstructured":"National Institute for Occupational Safety and Health. Occupational cancer.https:\/\/www.cdc.gov\/niosh\/topics\/cancer\/default.html. Accessed 14 May 2019."},{"key":"e_1_2_12_68_1","unstructured":"National Cancer Institute.https:\/\/www.cancer.gov\/. Accessed 14 May 2019."},{"key":"e_1_2_12_69_1","unstructured":"Centers for Disease Control and Prevention. Mesothelioma Registry Feasibility: Request for Information.https:\/\/www.federalregister.gov\/documents\/2019\/04\/08\/2019\u201006784\/mesothelioma\u2010registry\u2010feasibility\u2010request\u2010for\u2010information. Accessed 14 May 2019."}],"container-title":["American Journal of Industrial Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ajim.23062","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/ajim.23062","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ajim.23062","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,7]],"date-time":"2023-09-07T20:18:30Z","timestamp":1694117910000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/ajim.23062"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,11,19]]},"references-count":68,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2020,2]]}},"alternative-id":["10.1002\/ajim.23062"],"URL":"https:\/\/doi.org\/10.1002\/ajim.23062","archive":["Portico"],"relation":{},"ISSN":["0271-3586","1097-0274"],"issn-type":[{"value":"0271-3586","type":"print"},{"value":"1097-0274","type":"electronic"}],"subject":[],"published":{"date-parts":[[2019,11,19]]},"assertion":[{"value":"2019-08-16","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2019-10-10","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2019-11-19","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}