Data Management of an Inflammatory Bowel Disease Registry.
Publication/Presentation Date
6-1-1992
Abstract
The history and etiology of inflammatory bowel disease which is characterized by two major disease processes: ulcerative colitis and Crohn's disease, remain unknown. Research is focussing on seven major areas of genetic, environmental and physiologic factors that apparently relate to this disease. Based on this background, a population based Inflammatory Bowel Disease Registry was established in 1987 in the Lehigh Valley area of southeastern Pennsylvania. Consent forms, patient data forms and protocols for operation and implementation were developed, and databases were designed to accommodate demographic, basic history, follow-up and relative history data. The databases were correlated with an IBD registry ID number which both enabled relational analyses and ensured confidentiality of data information. The registry continues to grow, providing feedback for both continued medical research and supportive information for IBD patients and their physicians.
Volume
16
Issue
2-3
First Page
113
Last Page
127
ISSN
0148-5598
Published In/Presented At
Reed, J. 3., Moser, K. A., Faust, L. A., & Mills, S. (1992). Data management of an inflammatory bowel disease registry. Journal Of Medical Systems, 16(2-3), 113-127.
Disciplines
Medical Sciences | Medicine and Health Sciences
PubMedID
1402437
Department(s)
Department of Medicine, Research
Document Type
Article