Extension of the World Trade Center Health Registry

摘要 世界贸易中心(WTC)健康登记处是美国历史上最大的灾后登记处，是 世界上运行时间最长的一次，因为它继续在不同的 超过71,000名执行9/11相关救援/恢复工作的人(响应者)，或生活在 2001年9月11日在曼哈顿下城工作或上学(幸存者)。书记官处的142项同行审查 到目前为止，出版物对9/11身心健康后果和 护理和告知9/11医疗保健政策和临床实践方面的差距。注册处还进行广泛的 将参与者介绍给WTC健康计划(WTCHP)并提供不确定的调查数据和 由独立或合作的外部研究人员为9/11相关研究提供招聘服务。这 续签将使书记官处能够在9/11事件后通过以下途径延长其流行病学研究和监测24年 后续健康调查和深入研究，包括癌症和死亡率评估和深入研究 与WTCHP实体进行研究，以确定潜在的新出现的健康状况。我们提出了5个具体目标： (1)保持登记处作为公共卫生资源，让卫生专业人员能够追踪和调查 疾病和康复方面的可能趋势(即，维护参与者的最新联系信息，保留这些信息 参与)；(2)通过促进医疗、公共卫生、 应急准备或其他与WTC健康计划相关的研究，重点是对 WTC幸存者队列(即继续与生命记录、癌症登记和住院数据匹配； 将癌症/死亡率评估延长至9/11事件后20年；进行第6波调查以确定队列健康 状态23-9/11事件24年后；进行定性研究以更好地了解9/11状况的持久性 及其缓解；评估9/11暴露和其他风险因素对健康进程的贡献 条件、功能障碍、与年龄有关的条件和未得到满足的医疗需求)；(3)：行为 应对老年人身心健康关切和具体医疗需求的社区活动 注册人和其他受9/11影响的人(即向注册人传播登记处的调查结果和建议， 公众和WTCHP领导层通过视频、社交媒体、电子通讯、网站；提供数据和其他 向参保者和公众提供资源；继续健康促进活动)；(4)：维持9/11治疗 帮助注册者和其他人找到与9/11相关的健康问题的转介计划(即，通知注册者 在9/11相关服务中，开展外展活动，帮助他们向WTCHP申请，包括那些 具体情况或未得到满足的护理需求)；和(5)：与WTCHP实体合作，探索监测 信号和治疗结果，包括9/11与罕见健康状况的联系(例如，自身免疫， 神经疾病)，针对选定的9/11状况的治疗结果，以及开展活动以解决 新出现的WTCHP关于健康和健康问题的优先事项

ABSTRACT The World Trade Center (WTC) Health Registry, the largest post-disaster registry in U.S. history, is among the world’s longest running as it continues to track long-term health impacts of the 9/11 disaster among a diverse cohort of over 71,000 persons who performed 9/11-related rescue/recovery work (responders), or who lived, worked or attended school in lower Manhattan on 9/11/2001 (survivors). The Registry’s 142 peer-review publications to-date contribute substantially to the literature on 9/11 physical and mental health outcomes and gaps in care and inform 9/11 healthcare policy and clinical practice. The Registry also conducts extensive outreach to refer enrollees to the WTC Health Program (WTCHP) and provides de-identified survey data and recruitment services for 9/11-related research by independent or collaborative external researchers. This renewal will enable the Registry to extend its epidemiological research and surveillance 24 years post- 9/11 via follow-up health surveys and in-depth studies, including cancer and mortality assessments and in-depth studies with WTCHP entities to identify potential emerging health conditions. We propose 5 specific aims: (1) Maintain the Registry as a public health resource to allow health professionals to track and investigate possible trends in illness and recovery (i.e., maintain updated contact information for enrollees, keep them engaged); (2) Expand knowledge about long-term health effects of 9/11 by facilitating medical, public health, emergency preparedness or other research relevant to the WTC Health Program with emphasis on impacts to the WTC survivor cohort (i.e., continue matches to vital records, cancer registries and hospitalization data; extend cancer/mortality assessments 20 years post-9/11; conduct a Wave 6 survey to ascertain cohort health status 23-24 years after 9/11; conduct qualitative research to better understand persistence of 9/11 conditions and their mitigation; assess the contribution of 9/11 exposure and other risk factors to the course of health conditions, functional impairment, age-related conditions, and unmet healthcare needs); (3): Conduct community activities to respond to the physical and mental health concerns and specific healthcare needs of enrollees and others exposed to 9/11 (i.e., disseminate Registry findings and recommendations to enrollees, the public, and WTCHP leadership via video, social media, e-newsletters, website; provide data and other resources to enrollees and the public; continue health promotion activities); (4): Maintain the 9/11 Treatment Referral Program to help enrollees and others find care for 9/11-related health problems (i.e., inform enrollees of 9/11-related services, conduct outreach to assist them in applying to the WTCHP, including those with specific conditions or unmet care needs); and (5): Collaborate with WTCHP entities to explore surveillance signals and treatment outcomes including 9/11 linkage with uncommon health conditions (e.g., autoimmune, neurological disease), treatment outcomes for selected 9/11 conditions, and conducting activities to address emerging WTCHP priorities regarding health and wellness issues..