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

Joanna M. Gaitens (), Melissa Culligan, Joseph S. Friedberg, Erica Glass, Maxwell Reback, Katherine A. Scilla, Ashutosh Sachdeva, Anthony Atalla and Melissa A. McDiarmid
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Joanna M. Gaitens: School of Medicine, University of Maryland, Baltimore, MD 21201, USA
Melissa Culligan: School of Medicine, University of Maryland, Baltimore, MD 21201, USA
Joseph S. Friedberg: School of Medicine, University of Maryland, Baltimore, MD 21201, USA
Erica Glass: School of Medicine, University of Maryland, Baltimore, MD 21201, USA
Maxwell Reback: School of Medicine, University of Maryland, Baltimore, MD 21201, USA
Katherine A. Scilla: School of Medicine, University of Maryland, Baltimore, MD 21201, USA
Ashutosh Sachdeva: School of Medicine, University of Maryland, Baltimore, MD 21201, USA
Anthony Atalla: School of Medicine, University of Maryland, Baltimore, MD 21201, USA
Melissa A. McDiarmid: School of Medicine, University of Maryland, Baltimore, MD 21201, USA

IJERPH, 2023, vol. 20, issue 6, 1-12

Abstract: 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.

Keywords: mesothelioma; registry; asbestos exposure (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2023
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