SOURCE: The Crohn's & Colitis Foundation of America (CCFA)

December 12, 2013 15:36 ET

Profile of Pediatric IBD: Initial Findings From CCFA Partners Kids & Teens

Report Provides Baseline Profile of US Children and Adolescents Living With IBD

HOLLYWOOD, FL--(Marketwired - December 12, 2013) - Initial data from a groundbreaking research initiative sponsored by the Crohn's & Colitis Foundation (CCFA) provide a snapshot of the health and well-being of children and adolescents living with inflammatory bowel diseases (IBD), according to research presented at the 2013 Advances in Inflammatory Bowel Diseases, CCFA's annual Clinical & Research Conference.

The CCFA Partners Kids & Teens study is creating an Internet community of young patients with IBD, with the goal of tracking their disease, treatment, and outcomes into adulthood. Lead author Michael D. Kappelman, MD of the University of North Carolina at Chapel Hill (UNC) comments, "CCFA Partners Kids & Teens seeks to establish a rich patient database that will help to hasten new research discoveries and translate them into treatments that will improve the lives of patients living with IBD."

The new initiative builds on CCFA Partners, an Internet-based study of adult IBD patients. This year, for the first time, patients aged 18 and younger were invited to enroll in CCFA Partners Kids & Teens. After giving informed consent, patients and parents completed surveys providing information on their disease, how it's being treated, and how it's affecting their lives.

Surveys were designed to be developmentally appropriate. If the children are older they provide more of the data themselves. "As much as possible, we wanted to try to capture the experience of living with IBD from the perspective of the patients," says Dr Kappelman. Nearly one-fourth of people with IBD are diagnosed during the childhood or teenage years; children are the fastest-growing population of IBD patients.

The new report presents baseline data on 419 participants enrolled during the first month of CCFA Partners Kids & Teens. The patients' median age was 13 years; 55 percent were boys and 45 percent girls.

Especially in the CD group, most of the children had received treatments aimed at modifying immune system responses. Many patients, including close to 20 percent of patients with UC, had already undergone surgery. At the time they completed the questionnaires, the patients typically had well-controlled disease.

Scores on a standard questionnaire indicated fairly good quality of life, although the children scored above population norms on anxiety, depression and fatigue symptoms. Anxiety and depression scores were higher for children who had active IBD.

CCFA Partners Kids & Teens focuses on aspects of IBD that are most important to patients and their parents, including health behaviors, disease symptoms and quality of life. The entire study takes place over the internet and is implemented by CCFA's Data Management Center at UNC. The information provided is kept completely confidential on UNC's secure servers. For more information or to enroll in the study, visit

As they reach their eighteenth birthday, Kids & Teens participants will transition to the CCFA Partners Study, allowing systematic collection of comprehensive data from childhood into adulthood. Plans are in place to link the CCFA Partners data to other research initiatives, and to encourage open sharing of data from both the pediatric and adult studies. It's all part of a larger effort in which researchers can collaborate more easily.

Crohn's disease and ulcerative colitis are painful, medically incurable illnesses that attack the digestive system. Crohn's disease may attack anywhere along the digestive track, while ulcerative colitis inflames only the large intestine (colon). Symptoms may include abdominal pain, persistent diarrhea, rectal bleeding, fever, fatigue and weight loss. Many patients require hospitalization and surgery. These illnesses can cause severe complications, including colon cancer in patients with long-term disease. Some 1.4 million American adults and children suffer from Crohn's disease or ulcerative colitis.

About the Crohn's & Colitis Foundation of America

The Crohn's & Colitis Foundation of America (CCFA) is the largest voluntary non-profit health organization dedicated to finding cures for Inflammatory Bowel Diseases (IBD). CCFA's mission is to cure Crohn's disease and ulcerative colitis, and to improve the quality of life of children and adults who suffer from these diseases. The Foundation works to fulfill its mission by funding research, providing educational resources for patients and their families, medical professionals, and the public, and furnishing supportive services for those afflicted with IBD. For more information, visit, call 888-694-8872, like us on Facebook, find us on LinkedIn or follow us on Twitter and Pinterest.

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