CCFA Partners Awarded Second Round of PCORI Funding to Further Expand Patient-Powered Research Network

Jul 23, 2015, 09:35 ET from Crohn's & Colitis Foundation of America

NEW YORK, July 23, 2015 /PRNewswire-USNewswire/ -- The Crohn's & Colitis Foundation of America (CCFA) announced today that, in collaboration with the University of North Carolina School of Medicine, it was awarded $1.6 million from the Patient-Centered Outcomes Research Institute (PCORI) to further engage with patients and expand the CCFA Partners Patient-Powered Research Network over the next three 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."

Last year, CCFA Partners received nearly $1 million from PCORI to develop and expand its health data network to be one of now 34 individual networks across the country that form the National Patient-Centered Clinical Research Network (PCORnet). PCORnet is a secure, national data network intended to improve the speed, efficiency, and use of patient-centered comparative effectiveness research (CER). It aims to provide access to a large amount of diverse, nationally representative health information that can support a range of study designs and make it easier to launch new studies. PCORnet focuses research on questions and outcomes useful to patients and those who care for them.

This funding award continues PCORI's support for CCFA Partners participation in PCORnet, a large, collaborative research initiative designed to link researchers, patient communities, clinicians, and health systems in productive research partnerships that leverage the power of large volumes of health data maintained by the partner networks. PCORnet will enable the nation to conduct clinical research more quickly and less expensively than is now possible and will ensure that research focuses on the questions and outcomes that matter most to patients and those who care for them.

"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."

More than 14,000 patients from all 50 states and four U.S. territories have enrolled in CCFA Partners, representing approximately one percent of the 1.6 million Americans living with an inflammatory bowel disease. This new funding will allow 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

As multi-factorial diseases, it is extremely difficult to identify the causes of IBD, yet understanding what is involved in disease onset and progression is critically important to identifying better treatments and ways to effectively manage the diseases.  Only patients can provide information about their day-to-day disease experience and it is this data, gathered over time, that researchers need to make progress in areas that matter most to IBD patients:  health behaviors, disease symptoms, and quality of life.

"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.

CCFA Partners is an online network for Crohn's disease and ulcerative colitis patients 18 and over that uses state-of-the-art bioinformatics to engage and gather information from patients that researchers can study and analyze. There is a parallel network, CCFA Partners Kids and Teens, to engage children and teens with IBD.

The CCFA Partners Patient Powered Research Network was selected to receive this PCORI funding award through a review process in which patients, caregivers, and other stakeholders joined scientists to evaluate proposals. Applications were assessed for the capacity of their network to collect complete, comprehensive clinical data, how well they will engage patients and other stakeholders, and their ability to maintain data security and patient privacy, among other criteria.

"We're pleased that CCFA Partners has been approved for this funding support to continue our productive mutual efforts to build what we intend to be a premier national resource for conducting high-quality, patient-centered clinical research," said PCORI Executive Director Joe Selby, MD, MPH. "I greatly appreciate the contributions of all the PCORnet partners during Phase I, which readied PCORnet for a robust start on an exciting second phase of expansion and the launch of several research studies."

The funding award to CCFA Partners Patient-Powered Research Network has been approved by PCORI's Board pending completion of a business and programmatic review by PCORI staff and negotiation of a formal award contract. PCORI has now approved or awarded over $250 million for PCORnet to support the partner networks and their coordination as well as the first of several demonstration research studies.

About CCFA
The Crohn's & Colitis Foundation of America (CCFA) is the largest voluntary non-profit health organization dedicated to finding cures for Inflammatory Bowel Diseases (IBD). CCFA's mission is to cure Crohn's disease and ulcerative colitis, and to improve the quality of life of children and adults who suffer from these diseases. The Foundation works to fulfill its mission by funding research, providing educational resources for patients and their families, medical professionals, and the public, and furnishing supportive services for those afflicted with IBD. For more information, visit, call 888-694-8872, like us on Facebook, find us on LinkedIn, or follow us on Twitter and Pinterest.

About UNC School of Medicine
The University of North Carolina School of Medicine is a nationally-ranked public medical school with campuses in Chapel Hill, Asheville, and Charlotte. Its mission is to be the nation's leading public school of medicine. In 2014, the UNC School of Medicine was ranked 14th in NIH research funding and 1st in Primary Care in U.S. News & World Report's Best Medical School Rankings. It is one of the few in the nation to excel at both teaching primary care skills and the fostering of research careers. The School of Medicine was established in 1879 and offers degrees in the fields of medicine, allied health sciences, and biomedical sciences.

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available at


SOURCE Crohn's & Colitis Foundation of America