Title

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

Disciplines

Medical Sciences | Medicine and Health Sciences

PubMedID

1402437

Department(s)

Department of Medicine, Research

Document Type

Article