SOURCE: The Crohn's & Colitis Foundation of America (CCFA)

The Crohn's & Colitis Foundation of America (CCFA)

December 20, 2013 12:40 ET

CCFA Partners Inititative Receives Funding From Patient-Centered Outcomes Research Institute

NEW YORK, NY--(Marketwired - December 20, 2013) - At a time when funding is increasingly difficult to secure, the Crohn's & Colitis Foundation of America's CCFA Partners Research Initiative has been approved for an award by the Patient-Centered Outcomes Research Institute (PCORI). CCFA Partners, a patient-powered research network, will use the funding to develop and expand a health data network that will be part of the National Patient-Centered National Clinical Research Network, or PCORnet. 

CCFA Partners is one of 29 individual networks selected by PCORI to form PCORnet, a secure, national data network intended to improve the speed, efficiency, and use of patient-centered comparative effectiveness research (CER). By integrating data available in the 29 individual networks, PCORnet 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. It will focus research on questions and outcomes useful to patients and those who care for them.

"Our IBD-focused, patient-powered research network will be a tremendous opportunity to build and strengthen alliances between the patient and scientific communities," said Michael Kappelman, MD, MPH, associate professor of pediatrics at the University of North Carolina School of Medicine and scientific director of this endeavor. "The project will utilize state-of-the art bioinformatics to enable patients to be more directly involved in all aspects of research. This will include the development of tools whereby patients can integrate and visualize their own data to gain insight into factors which may affect their own health."

CCFA Partners reflects and extends CCFA's commitment to empower IBD patients and provide information and support. The internet-based study focuses on the aspects of IBD most important to patients, including health behaviors, disease symptoms, and quality of life. The study is implemented by CCFA's Data Management Center at the University of North Carolina at Chapel Hill at Chapel Hill (UNC).

"Everything we do at CCFA is with our patients in mind," said Richard J. Geswell, president and CEO of the Crohn's & Colitis Foundation of America. "It's gratifying to know that PCORI and CCFA share the same long-term vision of empowering patients to live full lives. This will be money well spent."

Funds awarded to the CCFA Partners Patient Powered Research Network will be used to enhance the already successful CCFA Partners program. The project will work to achieve the following aims:

  • Enhance the network expansion, diversity, and retentionof CCFA Partners participants
  • Build a robust network community, including patient governance structures that allow greater involvement of patients in research
  • Expand the CCFA Partners database to include electronic health records, data from health apps and devices, and biological samples
  • Create a customized, yet scalable and adaptable, distributed data network (i.e. virtual database) by repurposing NASA-built technology
  • Develop and test patient- and provider-focused tools that utilize individual patient data to improve health behaviors, healthcare decisions and outcomes
  • Further engage the scientific community through open collaboration and data sharing
  • Rapidly disseminate new knowledge to patients, enabling them to improve their health

The project, with a proposed budget of approximately $1,000,000, will run for 18 months beginning in January 2014. R. Balfour Sartor, MD, chief medical advisor for CCFA, will serve as the project's principle investigator, while scientific director, Kappelman, will lead the multidisciplinary project team, which includes co-investigators from CCFA, UNC, Crohnology, Patients Know Best, Validic, and White River Computing. A patient governance committee, comprised of engaged and knowledgeable IBD patients, will work closely with the internationally recognized scientific team to achieve the goals set forth in the proposal.

The CCFA Partners Patient Powered Research Network was selected through a review process in which patients, caregivers, and other stakeholders joined scientists to evaluate the 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 are pleased that CCFA Partners will be part of this exciting initiative to build the data structures needed to significantly enhance the speed and efficiency of patient-centered comparative effectiveness research," said PCORI executive director, Joe Selby. "The process to select the awardees was very competitive and CCFA Partners demonstrated it has the expertise, resources, and commitment to engaging patients and other stakeholders to be an excellent fit in PCORnet."

"The PCORnet infrastructure will allow our CCFA network to work together collaboratively with other patient networks and networks of healthcare providers, including the ImproveCareNowpediatric IBD network," said principal investigator Dr. Balfour Sartor.

All awards are approved pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract. PCORI has awarded a total of $464.4 million since it began funding CER in 2012. For more information about PCORI funding, visit

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 the 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

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