Extension of the World Trade Center Health Registry (U50)

世界贸易中心健康登记处 (U50) 扩建

• 批准号: 9475563
• 负责人: MARK R FARFEL
• 金额: $ 766.63万
• 依托单位: NEW YORK CITY HEALTH/MENTAL HYGIENE
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-07-01 至 2021-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9475563
• 关键词: Extension; World; Trade; Center; Health

ABSTRACT The World Trade Center (WTC) Health Registry is the largest post-disaster registry in U.S. history. The Registry follows a diverse cohort of over 71,000 persons who performed 9/11-related rescue/recovery work, or who lived, worked or attended school in lower Manhattan on 9/11/2001. The Registry aims to identify the long- term physical and mental health effects of the WTC disaster. We propose five Specific Aims for the Extension of the Registry. (1) Maintain the Registry as a valuable public health resource to allow health professionals to track and investigate possible trends in illness and recovery. Aim 1 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; and outreach activities to boost response to Registry studies. (2) Expand knowledge about the long-term health effects of 9/11 by facilitating medical, public health or emergency preparedness research, or other scientific research relevant to the WTC Health Program with special emphasis on impacts to those who lived, worked or attended school in the disaster area. Aim 2 entails conducting priority epidemiological analyses using data from Wave 1 (2003-04), Wave 2 (2006-08), Wave 3 (2011-12), and Wave 4 (2015-16) surveys and in-depth studies, including analyses to assess risk factors for the development or persistence of respiratory and mental health conditions; extending assessment of cancer and mortality incidence through 15 years post-9/11; investigating potential emerging health conditions through public health surveillance and follow-up studies; developing and conducting a Wave 5 survey using multiple survey modes (paper, web) to ascertain the health status and 9/11-related healthcare needs of the cohort 18- 19 years after 9/11. (3) Conduct community activities to respond to the physical and mental health concerns and specific health care needs of enrollees and other persons exposed to 9/11. Aim 3 will be achieved by disseminating 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. (4) Maintain the Treatment Referral Program to help enrollees and others find care for 9/11-related health problems. Aim 4 will be achieved by offering health care referrals to enrollees with 9/11 related health conditions and symptoms based on information from Registry surveys, evaluating the program and sharing findings with the WTC Health Program. (5) Collaborate with other WTC Heath Program entities to explore surveillance signals and treatment outcomes. The Registry will facilitate independent and collaborative 9/11-related research by providing qualified external researchers with de-identified data and access to enrollee subgroups through Registry- facilitated recruitment.

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。这个 登记遵循的是执行与9/11有关的救援/恢复工作的71,000多人的不同队列，或 2001年9月11日在曼哈顿下城居住、工作或上学的人。注册处的目标是识别长期- WTC灾难对身心健康的长期影响。我们为延期提出了五个具体目标 注册处的地址。(1)保持登记处作为宝贵的公共卫生资源，让卫生专业人员能够 跟踪和调查疾病和康复方面的可能趋势。目标1将维持关键的注册表基础设施 通过沟通和跟踪活动，保持与参与者的联系，并最大限度地利用有效的 联系信息；及时与参与者沟通，以解决问题并保持他们的参与度 有兴趣参与今后的研究；以及开展外联活动，以促进对登记册研究的反应。(2) 通过促进医疗、公共卫生或 应急准备研究，或与WTC健康计划相关的其他科学研究 特别强调对灾区生活、工作或上学的人的影响。目标2需要 利用第一波(2003-04)、第二波(2006-08)、第三波的数据进行优先流行病学分析 (2011-12年)和第4波(2015-16年)调查和深入研究，包括分析评估以下方面的风险因素 呼吸系统和精神健康状况的发展或持续；癌症的扩展评估 9/11事件后15年的死亡率和死亡率；通过以下途径调查潜在的新兴健康状况 公共卫生监测和后续研究；制定和实施第五波调查，使用 调查模式(纸张、网络)，以确定队列的健康状况和9/11相关的医疗需求18- 9·11事件19年后。(3)开展社区活动，回应身心健康关切 以及参与者和其他受9/11影响的人的具体卫生保健需求。目标3将在 传播登记处的调查结果和建议以及与9/11有关的服务和信息 向参与者、公众和政策制定者提供资源；开发和提供数据资源，如 确定了登记处数据库和在线数据工具，供参与者、公众和研究人员使用。(4)维护 治疗转介计划，帮助注册者和其他人找到与9/11相关的健康问题的护理。目标4将 通过向与9/11相关的健康状况和症状的参与者提供医疗转介来实现 基于注册调查的信息，评估该计划，并与WTC Health分享结果 程序。(5)与其他WTC健康计划实体合作，探索监测信号和治疗 结果。书记官处将通过以下方式促进独立和合作的9/11相关研究 合格的外部研究人员，可以通过注册表获得未识别的数据和对注册子组的访问权限- 促进了招聘。