The purpose of this study is to compare the genes of African American children and adults who have inflammatory bowel disease (IBD) with the genes of those who do not have IBD. Genes are pieces of hereditary material found in human cells. How an individual's genes cause intestinal inflammation in IBD is still being tested and not much is known about the association between genes and IBD in individuals with African ancestry. We hope to understand which genes cause IBD and if certain genes can help doctors personalize treatment for patients with IBD. For more information please contact IBDResearch@email.chop.edu.

CAPTURE Inflammatory Bowel Disease (IBD) is a multi-center, longitudinal study designed with the goal of advancing precision medicine in pediatric IBD. Participants in CAPTURE IBD will continue to receive their usual care at the Children's Hospital of Philadelphia. The study team will ask participants to give blood, stool, and tissue samples at the same time as scheduled IBD clinical visits, endoscopy, or bowel surgery visits. Additionally, participants will be asked to complete electronic surveys at scheduled clinic visits, including any scheduled endoscopy or bowel surgery visits. The study will use the biospecimens and health data as a research resource that can help scientists to answer questions like:

• Can we help guide the selection of the most effective IBD therapies for pediatric and young adult populations?
• Can we help identify new treatments for pediatric patients who are not responding to current available therapies?
• Can we advance our understanding of who are the best candidates for surgery in pediatric Crohn's disease and the best treatment approaches after surgery?

CAPTURE IBD will enroll 3,000 patients, ages 4-21 years old, who have an established or suspected diagnosis of IBD at 12 sites across the United States.

The study aims to understand which genes cause IBD and expand on what is known about how IBD affects those with African ancestry.

Patients are being recruited within the first two years of diagnosis at their scheduled infusion visits.

Participation in the study will last up to five years and includes an annual collection of blood, stool, and biopsy samples, and a one-time saliva sample at the first visit.

All study visits will align with clinically indicated visits already scheduled, and biopsy collection will only occur at scopes that are part of the patient's clinical care.

This study is being done in collaboration with hospitals around the country, and is headed by Emory University in Atlanta, Georgia. Participants will be compensated for their time and effort, upon completion of each visit.

Kids with IBD (inflammatory bowel disease) often struggle with tiredness and difficulty doing everyday activities, which can make life harder, but there aren't good tools to measure these problems in children. This study aims to create special tools to measure fatigue and disability in kids aged 2-18. Researchers will talk to kids and their parents to find out what issues matter most and use this information, along with medical records, to design the tools. The goal is to help doctors track these problems better and improve care for children with IBD. This study is being done in collaboration with the Shaare Zedek Medical Center. Participants will be compensated for their time and effort, upon completion of the interview.