The CCFA Partners project, which was launched by the non-profit organization Crohn’s & Colitis Foundation of America (CCFA) and the University of North Carolina School of Medicine (UNC), has been awarded a $1 million grant from the Patient–Centered Outcomes Research Institute (PCORI). The portal is a research partnership designed to connect patients who suffer from inflammatory bowel diseases (IBD) with the scientific community.
PCORI granted the $1 million award to the project to help enable its development and expansion, and included it in the National Patient-Centered Clinical Research Network (PCORnet). There are currently 29 projects in PCORnet, which is a data network designed to accelerate efficiency and usability of patient–centered comparative effectiveness research (CER).
“CCFA Partners builds and strengthens alliances between the IBD patient and scientific communities,” said the scientific director of the initiative, Michael Kappelman, MD, MPH, who is an associate professor at UNC. “We’re empowering patients to be more directly involved in all aspects of research, including the generation of and influence on research topics and in network governance. Those who contribute will benefit the most, because we’re also designing mechanisms to more effectively share research findings with network participants.”
The organization and the academic facility are using the most recent bioinformatics in order to engage patients who suffer from Crohn’s disease and ulcerative colitis, as well as collect information that can be used by physicians and researchers on clinical studies and other patient-generated data. At the first-of-its-kind portal CCFAPartners.org, patients can create an account and have access to data and tools on the disease and its management.
The initiative was designed to overcome a major obstacle associated with IBD. The disease’s causes are difficult to determine, making research for improving treatment outcomes and understanding the progression of the disease complicated. In addition, because only patients are able to give information on their daily experiences, collecting patient information is expected to improve health behaviors, disease symptoms, and quality of life of those with IBD.“One of the greatest promises of new information technologies for research is the ability to aggregate large numbers of patients’ experiences in a timely manner, to inform study design and provide real-life answers to questions about chronic diseases,” added the investigator at CCFA Partners and professor of medicine at UNC, Robert S. Sandler, MD, MPH. “As its capacities are expanded, CCFA Partners holds real promise of changing the paradigm of IBD research. As ‘citizen scientists,’ IBD patients can, themselves, play a vital role in speeding new treatment discovery and development.”Since CCFA Partners’ launch in 2011, it has successfully enrolled more than 13,000 adult participants who suffer from IBD. The organization and the academic institution believe that they will be able to increase the participants to 30,000 people by 2016. In order to engage in the project, patients fill out an online survey every six months, and can also provide daily data by linking their health-tracking devices to the website.In addition to CCFA Partners, CCFA has recently launched another online project, in collaboration with the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) called Just Like Me, especially designed for young patients with IBD. The interactive site has several featured stories and videos from teenagers with IBD, as well as information regarding dealing with school, managing stress, dating, diet, stories from the patients and the latest research updates.