The Crohn's & Colitis Foundation of America (CCFA) is collaborating with the University of North Carolina School of Medicine (UNC) to create a research partnership between patients with inflammatory bowel disease (IBD) and the scientific community. CCFA Partners is a "patient-powered research network" for Crohn's disease and ulcerative colitis (collectively known as IBD) that uses state-of-the-art bioinformatics to engage and gather information from patients that researchers can study and analyze along with clinical and other patient-generated data.
By creating a username and password at www.ccfapartners.org, IBD patients can access information and tools to track, better understand and manage their disease, while also helping to shape the program's research agenda by posing and voting on research topics. This patient- centered research portal is the first of its kind in the field of IBD for adults and will enable critical research to be conducted.
"CCFA Partners builds and strengthens alliances between the IBD patient and scientific communities," said Michael Kappelman, M.D., MPH, associate professor, UNC, and scientific director of the initiative. "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."
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, ultimately, cures. 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.
Launched in 2011, CCFA Partners currently has enrolled over 13,000 IBD adult patients, with plans to increase to 30,000 patients by early 2016. IBD patients who participate complete an online survey every six months, and can contribute day-to-day data by linking their health-tracking device (e.g., Fitbit, etc.) to its web site. Patients can access their information and also see how their individual health data compares with other IBD patients. CCFAPartners.org also provides access to apps and tools to help empower patients and better manage their disease.
Robert S. Sandler, M.D., MPH, a UNC professor and a CCFA Partners investigator, said, "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. 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."
CCFA Partners received a nearly $1 million award from the Patient-Centered Outcomes Research Institute (PCORI) to develop and expand, making it one of 29 individual networks that form PCORnet: the National Patient-Centered Clinical Research Network, a secure, data network intended to improve the speed, efficiency and use of patient-centered comparative effectiveness research (CER). CCFA continues to fund both CCFA Partners and CCFA Partners Kids & Teens.