Confronting the informatics challenges of the National Children's Study

Seminar Date: 
Seminar Time: 
11am - 12pm
Seminar Location: 
The Offices at Baum - Room 407A
William Hogan, MD
Presenter's Institution: 
University of Arkansas Medical School

The informatics challenges posed by a 21-plus-year, large-scale, nationwide, observational cohort study include (1) finding available software modules for study operations that includes functionality for participant registration, study calendaring, electronic case report forms, specimen collection and management, etc., (2) integrating these modules, (3) submitting data from the modules into a study-specific XML format to a centralized study repository, (4) coping with constantly changing directives, deadlines, and artifacts, (5) educating scientists, bureaucrats, and private contractor companies in the principles and best practices of informatics, and (6) ensuring that data will be available and understandable and valuable 21+ years from now.  We have taken the approach that the combination of open architecture, open specifications, and open-source software are the most promising means of meeting these challenges to the fullest extent.