Details and Information
Area(s) of Focus: Inflammatory bowel diseases (Crohn’s disease and ulcerative colitis)
Population Characteristics: All
Organization: Crohn’s & Colitis Foundation of America (CCFA)
Principal Investigator: Michael Kappelman, MD, MPH
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 Crohn’s and Colitis Foundation of America (CCFA) Partners Patient-Powered Research Network (PPRN) was developed in response to the growing need for CER and translational research in IBD. You can learn more about CCFA Partners PPRN here.
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 CCFA-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 15,000 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 19 peer-reviewed scientific papers (view completed research) and several studies currently under way (view active studies).