Respiratory Health Division, National Institute for Occupational Safety and Health, Centers for Disease Control and Prevention, Morgantown, West Virginia.
Department of Biomedical Informatics, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania.
Am J Ind Med. 2020 Feb;63(2):105-114. doi: 10.1002/ajim.23062. Epub 2019 Nov 19.
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. The workshop included formal presentations by subject matter experts and a moderated group discussion. 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, deidentification, and lack of exposure information critical to understanding as yet unrecognized causes of disease. National disease registries for amyotrophic lateral sclerosis (ALS) 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. 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.
几十年来，美国恶性间皮瘤的负担和预后基本保持不变，每年约有 3200 例新发病例和 2400 例死亡。为了解决导致不良结果的护理和研究差距，2019 年 3 月，间皮瘤应用研究基金会召开了一次关于建立全国间皮瘤登记处的潜在有用性和可行性的研讨会。研讨会包括由专题专家进行的正式介绍和小组讨论。研讨会参与者确定了登记处的首要任务是：(a)在诊断后不久将患者与高质量的护理和临床试验联系起来；(b)及时向研究人员提供有用的数据和生物标本。现有的捕获间皮瘤病例的数据库受到报告延迟、去识别和缺乏暴露信息等因素的限制，这些信息对了解尚未认识到的疾病原因至关重要。美国的肌萎缩侧索硬化症（ALS）和其他国家的间皮瘤国家疾病登记处为登记处的结构如何满足患者和科学界的需求提供了范例。应开展小规模试点倡议，以验证快速识别病例的方法，制定便利患者获得基于指南的标准护理和试验性治疗的程序，并探索与研究人员共享数据的方法。最终，联邦协调和资金将是建立全国间皮瘤登记处以改善间皮瘤结果和预防这种毁灭性疾病未来病例的成功的关键。
