Laying the Foundation for a Mesothelioma Patient Registry: Development of Data Collection Tools

Details

• Personal Author:
  Atalla A ; Culligan M ; Friedberg JS ; Gaitens JM ; Glass E ; McDiarmid MA ; Reback M ; Sachdeva A ; Scilla KA
• Description:
  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. [Description provided by NIOSH]
• Subjects:
  Asbestos Inorganic Chemicals Neoplasms Occupational Exposure Occupational Health Safety Surveys And Questionnaires
• Keywords:
  Asbestos Exposure Author Keywords: Mesothelioma Cancer Registries Mesothelioma Occupational Exposure Questionnaires Registry Surveillance
• ISSN:
  1660-4601
• Document Type:
  Text
• Funding:
  Cooperative Agreement
• Genre:
  Journal Article
• Place as Subject:
  Maryland ; OSHA Region 3 ; Pennsylvania
• CIO:
  National Institute for Occupational Safety and Health (NIOSH)
• Topic:
  Workplace Safety & Health
• Location:
  North America
• Volume:
  20
• Issue:
  6
• NIOSHTIC Number:
  nn:20070159
• Citation:
  Int J Environ Res Public Health 2023 Mar; 20(6):4950
• Contact Point Address:
  Joanna M. Gaitens, School of Medicine, University of Maryland, Baltimore, MD 21201, USA
• Email:
  jgaitens@som.umaryland.edu
• Federal Fiscal Year:
  2023
• NORA Priority Area:
  Construction ; Manufacturing
• Performing Organization:
  University of Pittsburgh at Pittsburgh
• Peer Reviewed:
  True
• Start Date:
  20060901
• Source Full Name:
  International Journal of Environmental Research and Public Health
• End Date:
  20260831
• Collection(s):
  National Institute for Occupational Safety and Health
• Main Document Checksum:
  urn:sha-512:1f696939c39a84c7e552be59da19db8c11a669f14bc4558cd6dc80b3b3e0386cb73952582094650c58100cca5b6b2e948b8fdfac1f701ff9fdd86e70650ad48f
• Download URL:
  https://stacks.cdc.gov/view/cdc/208434/cdc_208434_DS1.pdf
• File Type:
  [PDF - 318.19 KB ]