Research

Pediatric Inflammatory Bowel Disease Registry

Protocol Description

This research registry will create a central repository of information about pediatric patients with inflammatory bowel disease (IBD) to help researchers increase the clinical base of knowledge about IBD in children. This registry will document the clinical course and response to commonly used therapies in children with newly diagnosed IBD at the Center for Inflammatory Bowel Disease at Children’s Hospital of Pittsburgh of UPMC. The information in this registry will be combined with similar data from 20 other pediatric gastroenterology centers in North America, collectively known as the Pediatric Inflammatory Bowel Disease Collaborative Research Group.

Eligibility Criteria

Patients who are newly diagnosed with IBD at the Children’s Center for Inflammatory Bowel Disease and who are less than 16 years old at the time of diagnosis are eligible to participate. It is expected that about 70 children will be enrolled at Children’s, and about 400 to 750 children will be enrolled in registries at other Pediatric Gastroenterology centers across the United States and Canada.
Boys: Newborn through 15 years
Girls: Newborn through 15 years

Requirements
A quality-of-life questionnaire along with medical record information will be placed into the research registry for each participant. Each participant's doctor will provide the registry with patient medical information every 3 months. It is expected that this data collection will continue for a period of approximately 2-7 years. Data collection will not continue after the patient’s 18th birthday.
Visits: 0
Duration: 2 - 7 years

Source of Support
UMPC Center for Inflammatory Bowel Disease

Status: Open for Enrollment