Through a partnership with the University of North Carolina School of Medicine, the Crohn’s & Colitis Foundation of America (CCFA) announced that it is the proud recipient of a research grant worth $1.6 million from the Patient-Centered Outcomes Research Institute (PCORI). The funding will go toward efforts to involve more inflammatory bowel disease (IBD) patients in the Foundation’s expansion of the CCFA Partners Patient-Powered Research Network over the next 3 years.

“We are very pleased that PCORI is providing additional funding to further expand CCFA Partners and how we engage with more patients,” said Caren Heller, MD, MBA, chief scientific officer for CCFA. “PCORI’s continued investment in this program demonstrates the important role patients play in contributing to and helping to shape the standard of IBD research.”

In 2014, PCORI pledged $1 million to CCFA Partners to expand its health data network, allowing it to join other 33 individual networks in the country that comprise the National Patient-Centered Clinical Research Network (PCORnet), a nationwide information network that facilitates more efficient use of patient-centered comparative effectiveness research (CER). This network makes a difference in the ease and speed at which researchers are able to begin and carry out new studies.

“As its capacities are grown, CCFA Partners will bring new opportunities to empower patients and their families to become citizen scientists—active and informed participants in their medical care,” said the study’s principal investigator, Michael Kappelman, MD, MPH, an associate professor of pediatrics at UNC. “By sharing personal experiences and information and collaborating with scientists and others through CCFA Partners, patients will be able to better understand Crohn’s disease and ulcerative colitis, collaborate in the development of new, more effective medical treatments, and influence the research agenda.”

Over 14,000 patients all over the country have signed up with CCFA Partners, accounting for roughly 1% of the 1.6 million Americans diagnosed with a type of IBD. The new grant will enable CCFA Partners to:

• Strengthen patient engagement and further collaborations with clinicians, researchers, and health systems through greater integration with existing CCFA initiatives, including IBD Plexus
• Increase enrollment, representativeness, and diversity within its network and develop new strategies to maintain a high level of participant engagement and retention over time
• Leverage its infrastructure to increase the number of research collaborations and funded studies, with an emphasis on patient-prioritized research

“This new research model really is a game-changer. For the first time, patients are involved at every step of the way — from advising the research process to being participants in studies. By being involved, I am empowered, and I really believe I am helping to shape the future of IBD,” said Nick Uzl, co-principal investigator for the CCFA Patient Powered Research Network.