Extension of the World Trade Center Health Registry (U50)

世界贸易中心健康登记处是美国历史上最大的灾后暴露健康登记处， 对71，437名直接受影响的人进行了与9/11相关的救援/恢复 在2001年9月11日在下曼哈顿工作或居住、工作或上学。目标是确定长期- 9/11世贸中心灾难对身心健康的长期影响;传播调查结果， 对参与者和其他暴露者、公众和科学界的建议;分享 有关9/11相关资源和服务的信息;并为医疗保健政策和灾难应对提供信息 规划具体目标是：（1）保持登记册作为一种宝贵的公共卫生资源;（2）扩大 通过继续登记了解9/11对身体和心理健康的长期影响 开展社群活动，以应对身心健康问题 以及参与者和其他暴露于9/11的人的特定医疗保健需求;以及（4）维持治疗 转介计划，以帮助登记者找到照顾9/11相关的健康问题。目标1活动将持续 通过通信和追查活动， 注册者，并最大限度地利用有效的联系信息;及时与注册者沟通， 解决关切问题，让他们参与并有兴趣参与未来的研究;外联 促进对登记研究的反应的活动;以及与科学、社区和劳工协商 顾问。目标2需要利用第一波（2003- 2004年）的数据进行重点流行病学分析 第二波（2006- 2008年）和第三波（2011- 2012年）调查，包括分析评估 随着时间的推移，严重的呼吸和精神健康状况的发展或持续存在;发展和 使用多种调查模式（纸张、网络和电话）进行第4波调查，以确定 9/11后13-14年队列的健康状况和9/11相关的医疗保健需求;扩展评估 9/11后10年的癌症和死亡率;调查潜在的新兴健康 通过公共卫生监测和后续研究，书记官处还将促进 独立和合作的9/11相关的研究，通过提供合格的外部研究人员， 识别数据并访问入组者分组进行招募。目标3将通过传播 (e.g.,（通过网站、年度报告、电子通讯） 向登记者、公众和决策者提供与9/11有关的服务和资源的信息; 并为登记者提供数据资源，如去识别化的登记数据库和在线数据工具， 公众和研究人员;目标4将通过向9/11登记者提供医疗保健转诊来实现 基于第3波和第4波调查信息的相关健康状况和症状， 评估该计划，并与世贸中心健康计划分享调查结果。

The World Trade Center Health Registry, the largest post-disaster exposure health registry in U.S. history, is following a diverse cohort of 71,437 directly affected people who performed 9/11-related rescue/recovery work or lived, worked or attended school in lower Manhattan on 9/11/01. The goals are to identify the long- term physical and mental health effects of the 9/11 WTC disaster; disseminate findings and recommendations to enrollees and others exposed, the public, and the scientific community; share information about 9/11-related resources and services; and inform healthcare policy and disaster response planning. Specific aims are to: (1) Maintain the Registry as a valuable public health resource; (2) Expand knowledge about the long-term physical and mental health effects of 9/11 by continuing the Registry research program; (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; and (4) Maintain a Treatment Referral Program to help enrollees find care for 9/11-related health problems. Aim 1 activities will sustain critical Registry infrastructure through communications and tracing activities to maintain contact with enrollees and maximize those with valid contact information; timely communications with enrollees to address concerns and keep them engaged and interested in participating in future research; outreach activities to boost response to Registry studies; and consultation with scientific, community and labor advisors. Aim 2 entails conducting priority epidemiological analyses using data from the Wave 1 (2003-04) Wave 2 (2006-08) and Wave 3 (2011-12) surveys, including analyses to assess risk factors for the development or persistence of serious respiratory and mental health conditions over time; developing and conducting a Wave 4 survey using multiple survey modes (paper, web and telephone) to ascertain the health status and 9/11-related healthcare needs of the cohort 13-14 years after 9/11; extending assessment of cancer and mortality incidence through 10 years post-9/11; and investigating potential emerging health conditions through public health surveillance and follow-up studies. The Registry will also facilitate independent and collaborative 9/11-related research by providing qualified external researchers with de- identified data and access to enrollee subgroups for recruitment. Aim 3 will be achieved by disseminating (e.g., via a web-site, annual report, e-newsletters) Registry findings and recommendations together with information on 9/11-related services and resources to enrollees, the public and policy makers; developing and providing data resources such as de-identified Registry databases and online data tools for enrollees, the public and researchers; Aim 4 will be achieved by offering healthcare referrals to enrollees with 9/11 related health conditions and symptoms based on information from the Wave 3 and 4 surveys and evaluating the program and sharing findings with the WTC Health Program.