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Last updated on April 23, 2014 at 17:36 EDT

Crohn’s & Colitis Foundation of America Seeks IBD Patients for Internet-Based National Study

July 12, 2011

NEW YORK, July 12, 2011 /PRNewswire-USNewswire/ — The Crohn’s & Colitis Foundation of America today announced that it has opened enrollment for CCFA Partners, a comprehensive Internet-based registry designed to study thousands of patients with Crohn’s disease or ulcerative colitis under a single research initiative. These chronic and often painful digestive diseases, collectively known as inflammatory bowel diseases (IBD), affect over 1.4 million Americans.

Unlike prior research, which has typically been conducted in small studies at major medical centers, this groundbreaking initiative aims to partner with 10,000 IBD patients and track their experiences with IBD over time. This will help researchers better understand the natural history and course of the disease, allowing them to address the issues that IBD patients face.

“The goal of CCFA Partners is to invite patients to help researchers understand how IBD is affecting them,” says Kimberly Frederick, Senior Vice President of Mission at the Crohn’s & Colitis Foundation of America. “We hope to use CCFA Partners to ultimately improve the quality of life for people with IBD.”

Patients who enroll will complete a brief confidential online survey to provide information about their experiences with IBD. Participants will be subsequently contacted via e-mail every three months with information about the study’s progress. Every six months they will be asked to update their disease conditions.

Patients interested in learning more and participating in CCFA Partners can visit http://ccfapartners.org.

About Crohn’s Disease and Ulcerative Colitis

Crohn’s disease and ulcerative colitis are painful, medically incurable illnesses that attack the digestive system. Crohn’s disease may attack anywhere from the mouth to the anus, while ulcerative colitis inflames only the large intestine (colon). Symptoms may include abdominal pain, persistent diarrhea, rectal bleeding, fever, 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, with as many as 150,000 under the age of 18. Most people develop the diseases between the ages of 15 and 35.

About the Crohn’s & Colitis Foundation

The Crohn’s & Colitis Foundation of America’s mission is to cure Crohn’s disease and ulcerative colitis, and to improve the quality of life of children and adults affected by these diseases. The Foundation ranks third among leading health non-profits in the percentage of expense devoted to research toward a cure, with more than 80 cents of every dollar the Foundation spends going to mission-critical programs. The Foundation consistently meets the standards of organizations that monitor charities, including the Better Business Bureau’s Wise Giving Alliance (give.org) and the American Institute of Philanthropy (charitywatch.org). For more information, contact the Foundation at 800-932-2423 or visit http://www.ccfa.org. Join CCFA on Facebook at http://www.facebook.com/ccfafb and follow CCFA on Twitter at http://www.twitter.com/ccfa.

SOURCE Crohn’s & Colitis Foundation of America


Source: newswire