CEDATA GPGE Patient Registry for Children and Adolescents with Inflammatory Bowel Disease

What this Trial Is About

Researchers are collecting clinical data on children and adolescents with inflammatory bowel disease IBD from specialized pediatric gastroenterology centers in German-speaking countries. This patient registry aims to gather real-world information to help understand IBD better without altering patient treatments. The project is coordinated by a group of 15 experts who meet twice a year to guide research and improve quality. Participating centers enter patient data through a secure, validated online platform at the start and during follow-up of the disease. The collected information is pseudonymized to protect privacy and is then summarized and shared back with the centers in an aggregated form. This approach allows centers to track clinical progress without influencing therapeutic decisions. Participants are involved by having their clinical data recorded periodically throughout their disease course. The main outcome measured is clinical remission status. The registry operates as an observational study without direct interventions or treatments assigned. Data collection continues over many years to support ongoing research and quality improvement initiatives in pediatric IBD care.

CEDATA GPGE - a Patient Registry for Children and Adolescents With Inflammatory Bowel Disease