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Development of an inflammatory bowel disease registry
J F Reed1, L Rosen, C F D'Angelo
1Research Department, Allentown Hospital, Lehigh Valley Hospital Center, Pennsylvania 18105.
Journal of Medical Systems
|December 1, 1988
Summary
A new Inflammatory Bowel Disease (IBD) registry was created to track clinical and epidemiological data for Crohn's Disease and Ulcerative Colitis patients. This initiative aims to improve disease awareness among patients and physicians.
Area of Science:
- Gastroenterology
- Epidemiology
- Clinical Research
Background:
- Inflammatory Bowel Disease (IBD) comprises Crohn's Disease and Ulcerative Colitis.
- IBD is associated with extraintestinal manifestations affecting multiple organ systems.
- Understanding IBD's clinical and epidemiological aspects is crucial for patient care.
Purpose of the Study:
- To establish a regional Inflammatory Bowel Disease (IBD) registry.
- To collect and analyze clinical and epidemiological data on IBD.
- To enhance disease awareness among patients and healthcare providers.
Main Methods:
- A registry was established across 18 hospitals and IBD specialists.
- Data collection utilized Basic History (HX), Operative Data (OR), and Annual Follow-up (FU) forms.
- Participation was voluntary, ensuring data confidentiality.
Main Results:
- The registry successfully collected data on the clinical and epidemiological features of IBD.
- The collected data will be disseminated through newsletters and symposia.
- This initiative promotes a better understanding of IBD's impact.
Conclusions:
- The regional IBD registry serves as a valuable resource for understanding disease patterns.
- Sharing registry results can improve IBD patient and physician awareness.
- Continued data collection and dissemination are vital for advancing IBD care.