CCFA Partners - Patients helping patients
CCFA Partners (www.ccfapartners.org) is a patient-powered research network that uses IBD patients’ self-reported information to enable innovative investigations into issues most important to those diagnosed with IBD, i.e., how disease progression and various treatment options impact their health outcomes and quality of life. More than 15,000 adult patients are providing feedback and data, as well as their own ideas for research, in this unique and vital partnership between IBD patients and the scientific community.
IBD patients are a critically important source of data about their day-to-day disease and treatment experience, which is information researchers need to advance toward better treatments options, and ultimately cures, for Crohn’s disease and ulcerative colitis. CCFA Partners uses state-of-the-art bioinformatics to engage and gather information from patients that can be studied and analyzed – along with clinical and other patient-centered data – to develop a better understanding of urgent issues affecting adults and children diagnosed with IBD.
Launched in 2012, CCFA Partners is a collaboration with the University of North Carolina School of Medicine (UNC), and is supported by the Patient-Centered Outcomes Research Institute (PCORI), a non-governmental organization established by the Affordable Care Act in 2010 to conduct research to help patients and their healthcare providers make more informed decisions.
For adult IBD patients…
Patients participating in CCFA Partners complete an online survey every six months that asks them about their disease condition, medication usage, nutrition, quality of life, and a variety of other important patient-reported outcomes. Patients can also contribute day-to-day data by linking their health-tracking device (e.g., CCFA’s GI Buddy and mobile health apps, such as Fitbit, diet trackers, etc.) to a dedicated website. This patient-supplied information is organized and provided to IBD researchers to enable comparative studies related to variations in treatment and health outcomes for patients. In addition, patients can ask questions and propose areas of research or inquiry, which other participants then help to prioritize by casting votes and adding their own ideas.
For pediatric IBD patients…
Nearly one fourth of individuals with IBD are diagnosed during their childhood or teenage years. Pediatric patients’ rapid physical and mental growth and development require special consideration related to IBD, but effects of the disease and treatment in this population need to be better understood. CCFA Partners Kids & Teens is a parallel study of CCFA Partners, with the goal to create a long-term community of patients who are engaged in research.
CCFA Partners anticipates providing a vehicle for a number of ancillary studies, including secondary data analyses, and supplemental Internet studies, e.g., educational interventions, biospecimen collection and chart reviews. Its registry may also be used as a recruitment tool for independent studies. Access to this information is restricted to the IBD research community. Register as a researcher.
CCFA Partners is led by a Research Team, based at the University of North Carolina, that is responsible for day-to-day study activities. The Team develops and implements surveys, provides advice about associated studies, analyzes data, prepares manuscripts for publications, and presents research at scientific meetings. Members include:
- Millie Long
- Michael Kappelman
- Robert Sandler
- Christopher Martin
- Elizabeth Jaeger
- Joseph Galanko
- Amber Robb
- Balfour Sartor
Current Activities & Objectives
To date, CCFA Partners has produced 25 abstracts and 12 full manuscripts for completed studies that focus on the role of diet, sleep disturbance, and exercise in IBD. Other studies look at IBD’s impact on quality of life, including depression and sexual interest and satisfaction.
Current research is being conducted in the following areas:
- Prevention activities (i.e., studies of bone health, skin care, and vaccination)
- Medication Adherence
CCFA Partners harnesses the untapped potential of those with the greatest stake in advancing our progress toward new and better treatments: IBD patients themselves. It advances an emerging trend in health care of the empowered “citizen scientist,” who is not just a passive recipient of medical care, or “guinea pig” being studied, but an active and informed participant who is partnering with caregivers and scientists to set the research agenda and better understand their disease. CCFA Partners enables patients to collaborate in meaningful ways with IBD researchers to benefit themselves and generations to come.
By leveraging new web-based applications, social media and recent technological advances (e.g., the capacity to develop and analyze large or complex data sets), CCFA Partners also brings new opportunities to generate, collect, and use patient, self-reported health information for both clinical and research purposes. An explosion in the tools available for the analysis and seamless integration of complex data is opening the way to novel and better-coordinated studies that will shift the paradigm in IBD research, and result in breakthrough discoveries that improve patient health outcomes and improve their quality of life.
As sufficient patient-reported data is collected through CCFA Partners, researchers will build disease-modeling algorithms to provide IBD patients with immediate feedback about how their current behaviors, environment, and lab results may affect their future outcomes. Patients will be able to test how hypothetical changes in their behaviors and/or treatments might affect these expected outcomes. These model outputs will, in turn, stimulate more meaningful interactions with their physicians.
CCFA Partners will continue to enroll additional adult and pediatric IBD patients in the study, while maintaining engagement to retain those already enrolled. Other key activities going forward include:
- CCFA Partners web-based “portal” for patient engagement and provision of self-reported information is being upgraded in design and functionality to be more attractive and user-friendly for patient participants.
- CCFA Partners Kids & Teens is being fully integrated with CCFA Partners.
- CCFA Partners is launching the first national research study focused on dietary intervention in IBD. The PCORI-funded project will study the effectiveness of the specific carbohydrate diet and Mediterranean-style diet to induce symptomatic and clinical remission, and in reducing the mucosal inflammation in patients with active Crohn’s disease. James Lewis, MD, a professor of medicine and senior scholar in the Center for Clinical Epidemiology and Biostatistics at the Perelman School of Medicine at the University of Pennsylvania, is the primary investigator.
Please contact Angela Dobes with any questions or comments regarding CCFA Partners or CCFA Partners Kids & Teens.