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

August 06, 2013 12:14 ET

Introducing CCFA Partners Kids & Teens

Ambitious New Research Study Designed to Improve the Quality of Life for Children With IBD

NEW YORK, NY--(Marketwired - August 06, 2013) -  Nearly one fourth of people with Crohn's disease and ulcerative colitis, also known as inflammatory bowel diseases (IBD), are diagnosed during the childhood or teenage years. Special consideration must be given to pediatric IBD patients who are undergoing rapid physical and mental growth and development. Knowing that the effects of these diseases and their treatments in this population need to be better understood, the Crohn's & Colitis Foundation of America (CCFA) is launching CCFA Partners Kids &Teens. CCFA Partners Kids & Teens is a parallel study of CCFA Partners which is comprehensive internet-based registry designed to study patients with Crohn's disease or ulcerative colitis under a single research initiative.

"Based on the tremendous success of CCFA Partners, expanding this initiative to include pediatric patients is the logical next step," said James Lewis, MD, MSCE, Chairman of CCFA's National Scientific Advisory Committee and Professor of Medicine and Clinical Epidemiology at the University of Pennsylvania. "To date, more than 12,000 patients have been enrolled in CCFA Partners which is helping us obtain a better understanding of issues facing patients with IBD. We also use the CCFA Partners network to provide topics for patients to discuss with their physicians to improve their quality of life."

The goal of CCFA Partners Kids & Teens is to create a long-term community of pediatric patients who are engaged in research. This study will focus 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 the University of North Carolina at Chapel Hill (UNC). The information provided is kept completely confidential on UNC's secure servers. For more information or to enroll in the study, visit www.ccfapartners.org.

"We are delighted to be partnering with CCFA on this groundbreaking research initiative," says Robert Sandler, MD, MPH, John T. and Nina C. Sessions Distinguished Professor of Medicine and Adjunct Professor of Epidemiology Division Chief. "We believe this project has excellent long term potential to improve our understanding of the impact of these debilitating diseases."

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 www.ccfa.org, call 888-694-8872, like us on Facebook, find us on LinkedIn or follow us on Twitter and Pinterest

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