CCFA Partners is an online registry of over 15,000 IBD patients from across the country- 14,500 and 800 kids - who fill out surveys about their disease to contribute toward research
CCFA Partners became a Patient Powered Research Network in 2015 It received a second grant from the Patient-Centered Outcomes Research Institute (PCORI) to further develop the network, which provides patients with an opportunity to influence the IBD research agenda through proposing and voting on research topics.
To date, 25 abstracts and 11 manuscripts have been generated from data collected by CCFA Partners
Crohn's & Colitis Foundation
The Crohn's & Colitis Foundation'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).