Extension of the World Trade Center Health Registry

Details

• Personal Author:
  Farfel M ; Walker DJ
• Description:
  Background: The WTC Health Registry, the largest post-disaster exposure registry in U.S. history, was created to follow for 20+ years a diverse cohort of 71,437 directly affected people who performed rescue/recovery work or who lived, worked, attended school or were present in lower Manhattan on 9/11/01. Goals are to identify the long-term health effects of 9/11 and gaps in care; disseminate findings and recommendations to enrollees, others exposed and the scientific community; inform enrollees about 9/11-related services; and inform healthcare policy and disaster response planning. Specific aims during this 3-year project period included: (1) Maintain the Registry as a public health resource; (2) Expand knowledge about medium -term physical and mental health effects of the 9/11 disaster; and (3) Respond to health concerns and needs of enrollees. Methods: Maintenance activities included communications with enrollees to maximize valid contact information, address concerns, and keep them engaged and interested in future research; tracing to locate lost enrollees; outreach to boost survey response rates; and consultation with scientific, community and labor advisors. Research activities included conducting priority epidemiological analyses using Wave 1 (2003-04) and Wave 2 (2006-08) survey data, including analyses to assess risk factors for the development or persistence of serious respiratory and mental health conditions over time; successfully conducting a Wave 3 (2011-12) adult survey (approx. 43,000 (63%) participated) and launching a pediatric survey (ongoing) to ascertain cohort health status and healthcare needs 10 years after 9/11; initial cancer and mortality assessments; investigations of emerging health conditions, including respiratory health of survivors; and facilitating independent and collaborative 9/11-related external research by providing de-identified data and facilitating recruitment of enrollees. Multiple record matches were conducted to link enrollee records to death records (e.g., NDI, NYC Vital Statistics, SSA) and 11 state cancer registries to assess mortality and cancer incidence 7-8 years after 9/11. Communications activities included disseminating findings to enrollees, the public and policy makers via the 9/11 health info website, annual reports, newsletters, and presentations at scientific conferences (n=39) and other meetings (n=29); developing and disseminating pediatric clinical guidelines; referring eligible enrollees to WTC Centers of Excellence and smoking cessation programs; and developing online data tools for enrollees, the public and researchers. Results: Registry publications and in-depth studies have been instrumental in informing 9/11-related health care policy for residents, area workers and rescue recovery workers. A total of 26 articles were published or submitted that reported on risk factors and health burden associated with a range of 9/11- related physical and mental health outcomes (e.g., cardiovascular disease, asthma, PTSD, sarcoidosis, birth outcomes, cancer, mortality, and co-occurring conditions) in the Registry population and/or subgroups (e.g., responders, survivors, children, tower survivors, volunteers). Multiple external and collaborative studies have addressed priority topics including PTSD and respiratory health among adults and children's mental health. Two PhD and eight master's theses were completed based on analyses of Registry data. The Registry continues to be a valuable public health resource, and enrollees remained engaged with few withdrawals (1%) and persons lost to follow-up (0.35%). [Description provided by NIOSH]
• Subjects:
  Epidemiology Health Promotion Mental Health Mortality Nervous System Occupational Health Public Health Respiratory System Safety September 11 Terrorist Attacks
• Keywords:
  Disaster Response Health Communications Health Effects Information Dissemination Mental Health Mortality Data Post-traumatic Stress Disorder PTSD Public Health Respiratory Health World Trade Center WTC

  More +
• Series:
  Grant Final Reports
• Publisher:
  National Institute for Occupational Safety and Health
• Document Type:
  Text
• Funding:
  Cooperative Agreement
• Genre:
  Final Cooperative Agreement Report
• Place as Subject:
  New York ; OSHA Region 2
• CIO:
  National Institute for Occupational Safety and Health (NIOSH)
• Division:
  OEP - Office of Extramural Programs
• Topic:
  Workplace Safety & Health
• Location:
  North America
• Pages in Document:
  1-53
• NIOSHTIC Number:
  nn:20062333
• NTIS Accession Number:
  PB2022-100468
• Citation:
  Atlanta, GA: U.S. Department of Health and Human Services, Public Health Service, Centers for Disease Control and Prevention, National Institute for Occupational Safety and Health, U50-OH-009739, 2012 Oct; :1-53
• Contact Point Address:
  Mark Farfel, ScD, New York City Department of Health and Mental Hygiene, Division of Epidemiology, World Trade Center Health Registry, 42-09 28th Street, 7th Floor, Mail Drop CN-6W, Long Island City, NY 11101
• Email:
  mfarfel@health.nyc.gov
• Federal Fiscal Year:
  2013
• NORA Priority Area:
  Services
• Performing Organization:
  New York City Health/Mental Hygiene
• Peer Reviewed:
  False
• Start Date:
  20090430
• Source Full Name:
  National Institute for Occupational Safety and Health
• End Date:
  20260630
• Collection(s):
  National Institute for Occupational Safety and Health
• Main Document Checksum:
  urn:sha-512:bb73988149864c51a5b9b5ec8d699f010fbfe1a449905b0326a4df2e15cb840135bbd56404d846bd20df303f3f1783be04e41bf9c5ac929c9b465588ec5bc067
• Download URL:
  https://stacks.cdc.gov/view/cdc/219049/cdc_219049_DS1.pdf
• File Type:
  [PDF - 182.52 KB ]