Sample Management Systems for the World Trade Center Health Registry
Lucas, R. (2004, May). Sample Management Systems for the World Trade Center Health Registry. Presented at International Field Directors and Technologies Conference, Phoenix, AZ.
The World Trade Center Health Registry is designed to assess the health effects of the World Trade Center (WTC) disaster of September 11, 2001. The Registry will follow participants to evaluate short and long term physical and mental health effects including those resulting from exposures to the dust, fumes, airborne particulates, on 9/11 and in the ensuing weeks as the fires burned. Persons who may enroll in the Registry include those who were in lower Manhattan on September 11, 2001; residents south of Canal Street; school children and staff enrolled in schools south of Canal Street; and persons involved in rescue, recovery, clean-up, and other work at the WTC site or Staten Island Recovery Operations between September 11, 2001 and June 30, 2002.
A major challenge of creating the WTC Health Registry was assuring adequate representation of selected groups. IRB approved methods were developed that included identifying entities in advance that had lists of potential registrants. Thus, potential registrants are identified either through a list building process or through self-registration on a project Web-site or by calling the Registry toll-free number, and then traced to generate or confirm contact information. Unique challenges in resource management result from the simultaneous processes of list building, self-identification, tracing and data collection. This paper addresses how data processing systems and web based tools were designed and implemented to address these challenges. Included in this presentation will be a discussion of tools developed to control the flow of cases between the various tracing and interviewing activities. We will also address the processes in place to identify and remove duplicate entries during the sample building process.