Workshop Summary: Potential Usefulness and Feasibility of a US National Mesothelioma Registry

Details

• Personal Author:
  Becich MJ ; Blackley DJ ; Cummings, Kristin J. ; Deapen D ; Harrison, Robert ; Hassan R ; Henley SJ ; Hesdorffer M ; Horton DK ; Mazurek JM ; Pass HI ; Taioli E ; Weissman, David N. ; Wu X-C ; Zauderer MG
• Description:
  BACKGROUND: 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. METHODS: The workshop included formal presentations by subject matter experts and a moderated group discussion. RESULTS: 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, de-identification, and lack of exposure information critical to understanding as yet unrecognized causes of disease. National disease registries for amyotrophic lateral sclerosis 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. CONCLUSIONS: 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. [Description provided by NIOSH]
• Subjects:
  Asbestos Environmental Exposure Inorganic Chemicals Morbidity Mortality Neoplasms Occupational Health Risk Assessment Risk Factors Safety
• Keywords:
  Author Keywords: Asbestos Exposure Levels Fatalities Malignancy Mesothelioma Morbidity Rates Mortality Rates Registry Risk Factors
• ISSN:
  0271-3586
• Document Type:
  Text
• Funding:
  Cooperative Agreement
• Genre:
  Journal Article
• Place as Subject:
  California ; Georgia ; Louisiana ; Maryland ; New York ; OSHA Region 2 ; OSHA Region 3 ; OSHA Region 4 ; OSHA Region 6 ; OSHA Region 9 ; Pennsylvania ; West Virginia
• CIO:
  National Institute for Occupational Safety and Health (NIOSH)
• Division:
  RHD - Respiratory Health Division
• Topic:
  Workplace Safety & Health
• Location:
  North America
• Pages in Document:
  105-114
• Volume:
  63
• Issue:
  2
• NIOSHTIC Number:
  nn:20057850
• Citation:
  Am J Ind Med 2020 Feb; 63(2):105-114
• Contact Point Address:
  David N. Weissman, MD, Respiratory Health Division, National Institute for Occupational Safety and Health, Centers for Disease Control and Prevention, 1095 Willowdale Rd, Morgantown, WV 26505
• Email:
  dqw4@cdc.gov
• Federal Fiscal Year:
  2020
• NORA Priority Area:
  Construction ; Manufacturing
• Performing Organization:
  University of Pittsburgh at Pittsburgh
• Peer Reviewed:
  True
• Start Date:
  20060901
• Source Full Name:
  American Journal of Industrial Medicine
• End Date:
  20260831
• Collection(s):
  National Institute for Occupational Safety and Health
• Main Document Checksum:
  urn:sha-512:ea63ab4ef9526632c6d3314ad1ef9546f8bf18ca82245384e869bd9386c0e8b70c63267390f8c5c9904bd2ed2bc1069108a435b37168915331551150f6bc9e2c
• Download URL:
  https://stacks.cdc.gov/view/cdc/215058/cdc_215058_DS1.pdf
• File Type:
  [PDF - 904.52 KB ]