Extension of the World Trade Center Health Registry

世界贸易中心健康登记处的扩建

• 批准号: 10313928
• 负责人: MARK R FARFEL
• 金额: $ 789.5万
• 依托单位: NEW YORK CITY HEALTH/MENTAL HYGIENE
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-07-01 至 2026-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10313928
• 关键词: Extension; World; Trade; Center; Health

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..

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之一。 世界上最长的运行，因为它继续跟踪9/11灾难的长期健康影响， 超过71，000人参与了9/11相关的救援/恢复工作（响应者），或幸存者， 2001年9月11日在下曼哈顿工作或上学（幸存者）。书记官处的142项同行审查 迄今为止的出版物对9/11身心健康结果的文献做出了重大贡献， 护理差距，并为9/11医疗保健政策和临床实践提供信息。书记官处还进行了广泛的 外展将登记者转介到WTC健康计划（WTCHP），并提供去识别的调查数据， 为独立或合作的外部研究人员进行的9/11相关研究提供招聘服务。这 更新将使登记处能够在9/11事件后将其流行病学研究和监测延长24年， 后续健康调查和深入研究，包括癌症和死亡率评估， 与WTCHP实体进行研究，以确定潜在的新出现的健康状况。我们提出五个具体目标： (1)将登记处维持为公共卫生资源，以便卫生专业人员进行跟踪和调查 疾病和恢复的可能趋势（即，维护注册者的最新联系信息， （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 世贸中心幸存者队列（即，继续匹配生命记录、癌症登记和住院数据; 将癌症/死亡率评估延长至9/11后20年;进行第6波调查以确定队列健康状况 9/11后23-24年的状况;进行定性研究，以更好地了解9/11状况的持续性 评估9/11暴露和其他风险因素对健康过程的影响 条件、功能障碍、年龄相关条件和未满足的医疗保健需求）;（3）：行为 开展社群活动，以应对以下人群的身心健康问题和具体保健需求： 参与者和其他暴露于9/11的人（即，向登记者传播登记处的调查结果和建议， 通过视频、社交媒体、电子通讯、网站向公众和WTCHP领导层提供数据和其他信息 向登记者和公众提供资源;继续开展健康促进活动）;（4）：维持9/11治疗 转诊计划，以帮助登记者和其他人找到照顾9/11相关的健康问题（即，通知参加者 与9/11相关的服务，开展外展活动，以帮助他们申请WTCHP，包括那些 具体情况或未满足的护理需求）;和（5）：与WTCHP实体合作，探索监测 信号和治疗结果包括9/11与不常见健康状况的联系（例如，自身免疫， 神经系统疾病），选定的9/11条件的治疗结果，并开展活动，以解决 WTCHP关于健康和保健问题的新优先事项..