IBD Partners Patient Powered Research Network

Details and Information

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Area(s) of Focus: Inflammatory bowel diseases (Crohn’s disease and ulcerative colitis)

Population Characteristics: All

Organization: University of North Carolina, Chapel Hill

Contact: [email protected]

Principal Investigator: Michael Kappelman, MD, MPH

Co-Principal Investigators: Nicholas Uzl and Laura Wingate

About IBD Partners

Crohn’s disease and ulcerative colitis are chronic inflammatory bowel diseases (IBDs) that affect approximately 1.4 million individuals in the United States, cost over $6 billion annually, and cause substantial morbidity and diminished quality of life. Improving patient-centered care and outcomes will require robust comparative effectiveness research (CER)–and safety research–as recently recognized by the Institute of Medicine. The IBD Partners Patient-Powered Research Network (PPRN) was developed in response to the growing need for CER and translational research in IBD. Learn more about IBD Partners PPRN.

During Phase I and the beginning of Phase II, we have fostered the development of a community of citizen scientists in IBD research. Specifically, we have done the following:

  • Created a unique partnership between the IBD scientific community, patient community, and the Crohn’s and Colitis Foundation-the leading IBD patient advocacy organization. Network governance is built on a framework of co-production.
  • Built a patient portal to recruit, retain, and engage members. Key functions include contributing patient-report outcome (PRO) data, linking mobile health data, viewing data to support disease management, and research prioritization.
  • Enrolled more than 15,500 members (approximately 1% of the U.S. IBD population) from all 50 states. Standardized PRO data, captured from more than 80 percent of members, have been mapped to the PCORnet common data model.
  • Built an efficient infrastructure for identifying, screening, and contacting network members for participation in clinical research. We have successfully collaborated within and outside of PCORnet, resulting in 24 peer-reviewed scientific papers (view completed research) and several studies currently under way (view active studies).

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Last updated on April 25, 2018