US IBD patients required for huge study

* Can the UK have one next?

The Crohn’s & Colitis Foundation of America has opened enrollment for CCFA Partners, which is a comprehensive Internet-based study of thousands of patients with Crohn’s disease or ulcerative colitis (which affects over 1.4 million Americans).

Previously,  research has typically been conducted in small studies at major medical centers, but this initiative aims to partner with 10,000 patients and track their experiences with Inflammatory Bowel Disease (IBD) over time.

The aim is to help researchers better understand the natural history and course of the disease, and in turn allow them to address the issues that 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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