The CCFA Partners project, which was launched by the non-profit organization Crohn’s & Colitis Foundation of America (CCFA) and the University of North Carolina School of Medicine (UNC), has been awarded a $1 million grant from the Patient–Centered Outcomes Research Institute (PCORI). The portal is a research partnership designed to connect patients who suffer from inflammatory bowel diseases (IBD) with the scientific community.
PCORI granted the $1 million award to the project to help enable its development and expansion, and included it in the National Patient-Centered Clinical Research Network (PCORnet). There are currently 29 projects in PCORnet, which is a data network designed to accelerate efficiency and usability of patient–centered comparative effectiveness research (CER).
“CCFA Partners builds and strengthens alliances between the IBD patient and scientific communities,” said the scientific director of the initiative, Michael Kappelman, MD, MPH, who is an associate professor at UNC. “We’re empowering patients to be more directly involved in all aspects of research, including the generation of and influence on research topics and in network governance. Those who contribute will benefit the most, because we’re also designing mechanisms to more effectively share research findings with network participants.”
The organization and the academic facility are using the most recent bioinformatics in order to engage patients who suffer from Crohn’s disease and ulcerative colitis, as well as collect information that can be used by physicians and researchers on clinical studies and other patient-generated data. At the first-of-its-kind portal CCFAPartners.org, patients can create an account and have access to data and tools on the disease and its management.
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