{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,6]],"date-time":"2026-03-06T11:22:07Z","timestamp":1772796127461,"version":"3.50.1"},"reference-count":40,"publisher":"MDPI AG","issue":"6","license":[{"start":{"date-parts":[[2023,3,11]],"date-time":"2023-03-11T00:00:00Z","timestamp":1678492800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100000030","name":"the U.S. Centers for Disease Control and Prevention\u2019s National Institute for Occupational Safety and Health","doi-asserted-by":"publisher","award":["75D30119P05558"],"award-info":[{"award-number":["75D30119P05558"]}],"id":[{"id":"10.13039\/100000030","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["IJERPH"],"abstract":"<jats:p>Mesothelioma, a cancer of mesothelial cells that line the chest, lungs, heart, and abdomen, is a relatively rare disease. In the United States, approximately 3000 individuals are diagnosed with mesothelioma annually. The primary risk factor for mesothelioma is occupational asbestos exposure which can occur decades prior to disease development, though in approximately 20% of cases, known asbestos exposure is lacking. While several other countries have developed mesothelioma registries to collect key clinical and exposure data elements to allow better estimation of incidence, prevalence, and risk factors associated with disease development, no national mesothelioma registry exists in the U.S. Therefore, as part of a larger feasibility study, a patient exposure questionnaire and a clinical data collection tool were created using a series of key informant interviews. Findings suggest that risk factor and clinical data collection via an on-line questionnaire is feasible, but specific concerns related to confidentiality, in the context of employer responsibility for exposure in the unique U.S. legal environment, and timing of enrollment must be addressed. Lessons learned from piloting these tools will inform the design and implementation of a mesothelioma registry of national scope.<\/jats:p>","DOI":"10.3390\/ijerph20064950","type":"journal-article","created":{"date-parts":[[2023,3,13]],"date-time":"2023-03-13T04:35:41Z","timestamp":1678682141000},"page":"4950","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Laying the Foundation for a Mesothelioma Patient Registry: Development of Data Collection Tools"],"prefix":"10.3390","volume":"20","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-1285-679X","authenticated-orcid":false,"given":"Joanna M.","family":"Gaitens","sequence":"first","affiliation":[{"name":"School of Medicine, University of Maryland, Baltimore, MD 21201, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4305-8715","authenticated-orcid":false,"given":"Melissa","family":"Culligan","sequence":"additional","affiliation":[{"name":"School of Medicine, University of Maryland, Baltimore, MD 21201, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4945-5589","authenticated-orcid":false,"given":"Joseph S.","family":"Friedberg","sequence":"additional","affiliation":[{"name":"School of Medicine, University of Maryland, Baltimore, MD 21201, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Erica","family":"Glass","sequence":"additional","affiliation":[{"name":"School of Medicine, University of Maryland, Baltimore, MD 21201, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Maxwell","family":"Reback","sequence":"additional","affiliation":[{"name":"School of Medicine, University of Maryland, Baltimore, MD 21201, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7904-8119","authenticated-orcid":false,"given":"Katherine A.","family":"Scilla","sequence":"additional","affiliation":[{"name":"School of Medicine, University of Maryland, Baltimore, MD 21201, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6491-8740","authenticated-orcid":false,"given":"Ashutosh","family":"Sachdeva","sequence":"additional","affiliation":[{"name":"School of Medicine, University of Maryland, Baltimore, MD 21201, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0009-0003-9907-6231","authenticated-orcid":false,"given":"Anthony","family":"Atalla","sequence":"additional","affiliation":[{"name":"School of Medicine, University of Maryland, Baltimore, MD 21201, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3455-9147","authenticated-orcid":false,"given":"Melissa A.","family":"McDiarmid","sequence":"additional","affiliation":[{"name":"School of Medicine, University of Maryland, Baltimore, MD 21201, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"1968","published-online":{"date-parts":[[2023,3,11]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"2782590","DOI":"10.1155\/2017\/2782590","article-title":"Life Expectancy in Pleural and Peritoneal Mesothelioma","volume":"2017","author":"Shavelle","year":"2017","journal-title":"Lung Cancer Int."},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"60","DOI":"10.1186\/s12940-022-00869-5","article-title":"Pleural mesothelioma risk by industry and occupation: Results from the Multicentre Italian Study on the Etiology of Mesothelioma (MISEM)","volume":"21","author":"Migliore","year":"2022","journal-title":"Environ. Health"},{"key":"ref_3","doi-asserted-by":"crossref","first-page":"985","DOI":"10.1002\/ajim.22218","article-title":"Mesothelioma and employment in Massachusetts: Analysis of cancer registry data 1988\u20132003","volume":"56","author":"Roelofs","year":"2013","journal-title":"Am. J. Ind. Med."},{"key":"ref_4","doi-asserted-by":"crossref","first-page":"476","DOI":"10.1002\/ajim.23245","article-title":"Incidence of mesothelioma and asbestosis by occupation in a diverse workforce","volume":"64","author":"DeBono","year":"2021","journal-title":"Am. J. Ind. Med."},{"key":"ref_5","doi-asserted-by":"crossref","unstructured":"Lemen, R.A., and Landrigan, P.J. (2021). Sailors and the Risk of Asbestos-Related Cancer. Int. J. Environ. Res. Public Health, 18.","DOI":"10.3390\/ijerph18168417"},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"786","DOI":"10.1080\/09553002.2019.1642540","article-title":"Mesothelioma mortality within two radiation monitored occupational cohorts","volume":"98","author":"Mumma","year":"2022","journal-title":"Int. J. Radiat. Biol."},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"9","DOI":"10.2486\/indhealth.37.9","article-title":"A historical cohort mortality study of workers exposed to asbestos in a refitting shipyard","volume":"37","author":"Kurumatani","year":"1999","journal-title":"Ind. Health"},{"key":"ref_8","doi-asserted-by":"crossref","first-page":"107","DOI":"10.1016\/j.taap.2018.04.008","article-title":"Mesothelioma and other lung disease in taconite miners; the uncertain role of non-asbestiform EMP","volume":"361","author":"Mandel","year":"2018","journal-title":"Toxicol. Appl. Pharmacol."},{"key":"ref_9","doi-asserted-by":"crossref","first-page":"S116","DOI":"10.1016\/j.yrtph.2007.09.014","article-title":"Investigation of exposures to commercial asbestos in northeastern Minnesota iron miners who developed mesothelioma","volume":"52","author":"Brunner","year":"2008","journal-title":"Regul. Toxicol. Pharmacol."},{"key":"ref_10","doi-asserted-by":"crossref","first-page":"388","DOI":"10.1136\/oemed-2013-101662","article-title":"Mortality and cancer incidence in a pooled cohort of US firefighters from San Francisco, Chicago and Philadelphia (1950\u20132009)","volume":"71","author":"Daniels","year":"2014","journal-title":"Occup. Environ. Med."},{"key":"ref_11","doi-asserted-by":"crossref","first-page":"489","DOI":"10.1097\/CEJ.0b013e32832f9bee","article-title":"The health impact of non-occupational exposure to asbestos: What do we know?","volume":"6","author":"Goldberg","year":"2009","journal-title":"Eur. J. Cancer Prev."},{"key":"ref_12","unstructured":"National Institute of Occupational Safety and Health (NIOSH), Department of Health and Human Services (2022, December 18). Report to Congress on Workers\u2019 Home Contamination Study Conducted under the Workers\u2019 Family Protection Act (29 U.S.C.671a). Publication No. 95-123, Available online: https:\/\/www.cdc.gov\/niosh\/docs\/95-123\/pdfs\/95-123.pdf."},{"key":"ref_13","doi-asserted-by":"crossref","first-page":"65","DOI":"10.1515\/REVEH.1996.11.1-2.65","article-title":"Pleural mesothelioma and household asbestos exposure","volume":"11","author":"Schneider","year":"1996","journal-title":"Rev. Environ. Health"},{"key":"ref_14","doi-asserted-by":"crossref","first-page":"449","DOI":"10.1016\/j.envres.2019.04.004","article-title":"Cancer incidence and mortality associated with non-occupational and low dose exposure to Libby vermiculite in Minnesota","volume":"175","author":"Konen","year":"2019","journal-title":"Environ. Res."},{"key":"ref_15","doi-asserted-by":"crossref","first-page":"207","DOI":"10.1038\/jes.2016.18","article-title":"Mortality from asbestos-associated disease in Libby, Montana 1979\u20132011","volume":"27","author":"Naik","year":"2017","journal-title":"J. Expo. Sci. Environ. Epidemiol."},{"key":"ref_16","unstructured":"(2022, December 21). Occupational Exposure to Asbestos. 29 CFR Parts 1910, 1915, and 1926, Available online: https:\/\/www.osha.gov\/laws-regs\/federalregister\/1994-08-10."},{"key":"ref_17","doi-asserted-by":"crossref","first-page":"4969","DOI":"10.1002\/cncr.30905","article-title":"The history and use of cancer registry data by public health cancer control programs in the United States","volume":"24","author":"White","year":"2017","journal-title":"Cancer"},{"key":"ref_18","unstructured":"(2023, January 19). World Trade Center Health Registry, Available online: https:\/\/www.blogs.cdc.gov\/yourhealthyourenvironment\/2014\/09\/11\/world-trade-center-health-registry."},{"key":"ref_19","unstructured":"(2022, December 20). Frequently Asked Questions about Medical and Public Health Registries. What Is a registry?, Available online: http:\/\/www.ncvhs.hhs.gov\/9701138b.htm."},{"key":"ref_20","first-page":"185","article-title":"Establishing Patient Registries for Rare Diseases: Rationales and Challenges","volume":"3","author":"Boulanger","year":"2020","journal-title":"Pharmaceut. Med."},{"key":"ref_21","doi-asserted-by":"crossref","first-page":"115","DOI":"10.1002\/ajim.23069","article-title":"An overview of existing mesothelioma registries worldwide, and the need for a US Registry","volume":"63","author":"Gerwen","year":"2020","journal-title":"Am. J. Ind. Med."},{"key":"ref_22","doi-asserted-by":"crossref","first-page":"607","DOI":"10.1136\/oemed-2016-103652","article-title":"Incidence of mesothelioma in Lombardy, Italy: Exposure to asbestos, time patterns and future projections","volume":"73","author":"Mensi","year":"2017","journal-title":"Occup. Environ. Med."},{"key":"ref_23","doi-asserted-by":"crossref","first-page":"2722","DOI":"10.1016\/j.ejca.2007.09.018","article-title":"Analysis of latency time and its determinants in asbestos related malignant mesothelioma cases of the Italian register","volume":"43","author":"Marinaccio","year":"2007","journal-title":"Eur. J. Cancer"},{"key":"ref_24","first-page":"23","article-title":"Epidemiological surveillance of malignant mesothelioma cases in Italy: Incidence and asbestos exposure figures by the Italian mesothelioma registry (ReNaM)","volume":"4","author":"Marinaccio","year":"2007","journal-title":"Epidemiol. Prev."},{"key":"ref_25","doi-asserted-by":"crossref","first-page":"760","DOI":"10.1136\/oem.2009.051466","article-title":"Incidence of extrapleural malignant mesothelioma and asbestos exposure, from the Italian national register","volume":"67","author":"Marinaccio","year":"2010","journal-title":"Occup. Environ. Med."},{"key":"ref_26","first-page":"507","article-title":"Tuscany Mesothelioma Registry (1988\u20132000): Evaluation of asbestos exposure","volume":"6","author":"Goini","year":"2002","journal-title":"La Medicina Del Lavora"},{"key":"ref_27","doi-asserted-by":"crossref","first-page":"191","DOI":"10.1007\/s00420-003-0498-6","article-title":"Factors influencing long-term survival in mesothelioma patients--results of the German mesothelioma register","volume":"3","author":"Neumann","year":"2004","journal-title":"Int. Arch. Occup. Environ. Health"},{"key":"ref_28","doi-asserted-by":"crossref","first-page":"206","DOI":"10.1179\/oeh.2003.9.3.206","article-title":"Malignant mesothelioma in Australia","volume":"3","author":"Leigh","year":"2003","journal-title":"Int. J. Occup. Environ. Health"},{"key":"ref_29","doi-asserted-by":"crossref","first-page":"173","DOI":"10.1080\/10937404.2016.1194254","article-title":"Malignant mesothelioma in Australia 2015: Current incidence and asbestos exposure trends","volume":"5\u20136","author":"Soeberg","year":"2016","journal-title":"J. Toxicol. Environ. Health B"},{"key":"ref_30","doi-asserted-by":"crossref","first-page":"689","DOI":"10.1002\/ajim.22739","article-title":"Capture and coding of industry and occupation measures: Findings from eight National Program of Cancer Registries states","volume":"8","author":"Freeman","year":"2017","journal-title":"Am. J. Ind. Med."},{"key":"ref_31","doi-asserted-by":"crossref","first-page":"449","DOI":"10.5694\/mja17.00397","article-title":"Mesothelioma in Australia: A review","volume":"207","author":"Musk","year":"2017","journal-title":"Med. J. Aust."},{"key":"ref_32","first-page":"718","article-title":"Latent period for malignant mesothelioma of occupational origin","volume":"34","author":"Lanphear","year":"1992","journal-title":"J. Occup. Med."},{"key":"ref_33","doi-asserted-by":"crossref","first-page":"377","DOI":"10.1016\/j.jbi.2008.08.010","article-title":"Research electronic data capture (REDCap)\u2014A metadata-driven methodology and workflow process for providing translational research informatics support","volume":"2","author":"Harris","year":"2009","journal-title":"J. Biomed. Inform."},{"key":"ref_34","doi-asserted-by":"crossref","unstructured":"Harris, P.A., Taylor, R., Minor, B.L., Elliott, V., Fernandez, M., O\u2019Neal, L., McLeod, L., Delacqua, G., Delacqua, F., and Kirby, J. (2019). The REDCap consortium: Building an international community of software partners. J. Biomed. Inform., 95.","DOI":"10.1016\/j.jbi.2019.103208"},{"key":"ref_35","doi-asserted-by":"crossref","first-page":"105","DOI":"10.1002\/ajim.23062","article-title":"Workshop summary: Potential usefulness and feasibility of a US National Mesothelioma Registry","volume":"2","author":"Cummings","year":"2020","journal-title":"Am. J. Ind. Med."},{"key":"ref_36","unstructured":"(2022, December 20). What Is a Certificate of Confidentiality?, Available online: https:\/\/grants.nih.gov\/policy\/humansubjects\/coc\/what-is.htm."},{"key":"ref_37","first-page":"23","article-title":"The epidemiological surveillance of malignant mesothelioma in Italy (1993\u20132015): Methods, findings, and research perspectives","volume":"1","author":"Marinaccio","year":"2020","journal-title":"Epidemiol. Prev."},{"key":"ref_38","doi-asserted-by":"crossref","first-page":"624","DOI":"10.1016\/j.ijmedinf.2014.06.005","article-title":"Acceptance and use of health information technology by community-dwelling elders","volume":"83","author":"Fischer","year":"2014","journal-title":"Int. J. Med. Inform."},{"key":"ref_39","doi-asserted-by":"crossref","first-page":"1072","DOI":"10.1093\/jamia\/ocaa070","article-title":"Opportunities at the intersection of work and health: Developing the occupational data for health information model","volume":"7","author":"Marovich","year":"2020","journal-title":"J. Am. Med. Inform. Assoc."},{"key":"ref_40","unstructured":"American Cancer Society (2022, December 05). What Are the Key Statistics about Malignant Mesothelioma?. Available online: https:\/\/www.cancer.org\/cancer\/malignant-mesothelioma\/about\/key-statistics.html."}],"container-title":["International Journal of Environmental Research and Public Health"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/1660-4601\/20\/6\/4950\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,10]],"date-time":"2025-10-10T18:52:39Z","timestamp":1760122359000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/1660-4601\/20\/6\/4950"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,3,11]]},"references-count":40,"journal-issue":{"issue":"6","published-online":{"date-parts":[[2023,3]]}},"alternative-id":["ijerph20064950"],"URL":"https:\/\/doi.org\/10.3390\/ijerph20064950","relation":{},"ISSN":["1660-4601"],"issn-type":[{"value":"1660-4601","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,3,11]]}}}