Melissa Dolan, PhD¹, Joseph J. Murphy, MA², Lisa Thalji³, Paul Pulliam, BA¹, and Robert M. Brackbill, PhD⁴. (1) Survey Research Division, RTI International, 203 N Wabash, Suite 1900, Chicago, IL 60601, 919-541-6000, mdolan@rti.org, (2) Program for Research in Survey Methodology, RTI International, 203 N Wabash, Suite 1900, Chicago, IL 60601, (3) Research Triangle Institute, 3040 Cornwallis Drive, Research Triangle Institue, NC 27709, (4) Office of Surveillance and Epidemiology, New York City Department of Health, 125 Worth St, Rm 315, New York City, NY 10013

The World Trade Center (WTC) Health Registry is a public health response to the September 11, 2001 disaster with collaboration of local and federal agencies and outside scientific advisors. The Registry will assess health effects from a wide range of exposures among affected residents, school children, rescue, recovery, and cleanup workers at the WTC site, Staten Island and barges, and persons in lower Manhattan on 9/11. Names and contact information for people with the highest likely exposures are being obtained from employers and directories. Registrants can also self-identify via the web site and toll-free number. As of January 26, 2004, 20,500 persons have been interviewed; interviewing is expected to be complete by August, 2004. Registrants will be followed for 20 years. Lists of potentially eligible residents were available for purchase, but the remaining sample of school children, rescue, recovery, and cleanup workers, and occupants of buildings on 9/11 is being built by directly requesting information from appropriate entities. Representatives of these entities are asked to provide a list of all potentially eligible persons, including current contact information. Nearly 200 lists have been obtained already. This presentation will trace the process of creating the sample frames for schools, rescue and recovery organizations, and businesses, including list integration and de-duplication, estimation of eligible participants, and development of methods for assessing coverage. The presentation will highlight how this method of list construction and assessment can be applied to other studies in which a retrospective frame may not be readily available.

Learning Objectives: At the conclusion of the session, the participant in this session will be able to

• Understand the complexity of building a retrospective sample of people exposed to a catastrpohic event in a dense urban area
• Describe the purpose and scope of sample building and the World Trade Center Health Registry
• Identify methods of list construction and assessment that can be applied to other studies in which a retrospective frame may not be readily available

Keywords: Registry, Methodology

Related Web page: www.wtcregistry.org

Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.