期刊
AMERICAN JOURNAL OF INDUSTRIAL MEDICINE
卷 63, 期 2, 页码 105-114出版社
WILEY
DOI: 10.1002/ajim.23062
关键词
asbestos; mesothelioma; registry
资金
- National Institute for Occupational Safety and Health [CDC NIOSH 1-U19-OH009077]
- Mesothelioma Applied Research Foundation
- NATIONAL CANCER INSTITUTE [ZIDBC011540, ZIABC010816] Funding Source: NIH RePORTER
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.
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