CCFA Partners seek IBD Patients for National Study

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.

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About The Crohn’s & Colitis Foundation of America (CCFA)

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.

CCFA sponsors basic and clinical research of the highest quality. The foundation also offers a wide range of educational programs for patients and health-care professionals, and provides supportive services to help people cope with these chronic intestinal diseases. These programs are supported solely by contributions from the public. Our areas of focus are:

Research Programs
CCFA has provided more than $150 million for research on the treatment and cure of IBD. Most recently, we have contributed to the identification of two regions on chromosomes that contain genes for IBD, and to the discovery of NOD2, the first gene for Crohn’s disease. Read more about our research programs.

Education Programs
CCFA provides information and education for the more than one million IBD patients and their families through a variety of periodicals (Take ChargeUnder the Microscope), books, awareness campaigns, local chapters, our Webcasts, and through this web site. We also reach CCFA’s members with exclusive mailings.

CCFA also offers professional education through Inflammatory Bowel Diseases, our professional journal, and health professional workshops.

Support Services
CCFA support services are delivered through its chapters nationwide which offer more than 300 support groups annually, summer camps for children with IBD, and a range of educational and training programs for local communities. Read more about our chapters or view our webcasts.

Fundraising Initiatives
Essential to CCFA’s mission, our ongoing fundraising efforts enable us to fund further research, as well as educational and support activities. CCFA raises more than $30 million annually through memberships, fundraising events, sponsorships, and other programs. Find out how you can support CCFA

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CCFA Seeks IBD Patients for Internet-Based National Study

July 12, 2011—

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.

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