The CCFA Partners Patient-Powered Research Network - Phase I

Crohn's disease (CD) and ulcerative colitis (UC) are chronic Inflammatory Bowel Diseases (IBDs) that affect approximately 1.2 million individuals in the United States, cost over six billion annually, and cause substantial patient morbidity, missed work and school, and diminished quality of life. Fortunately, we have entered an era of rapid discovery of the genetic and microbiome-related factors involved in disease pathogenesis, and are now at the forefront of "personalized medicine." To translate these advances in basic science research into improved patient-centered care and outcomes, emerging genomic and microbiome data must be coupled with comparative effectiveness (and safety) research. Ultimately, this will enable patients and physicians to make collaborative choices about when, in whom, and how to use current and future therapeutic options (i.e., medications, surgery, diet, fecal transplant, etc.).

The Crohn's and Colitis Foundation of America (CCFA) Partners study is a novel and highly successful Internet cohort of over 12,500 patients with IBD (~1% of US IBD population), focusing on patient-reported exposures, health behaviors, and outcomes. In this application, we propose to radically transform this study into a full-scale patient-powered research network.

We have developed a partnership with Crohnology, the leading social network for patients with this condition, and have identified best-in-class vendors to assist in integrating data from mHealth apps and devices and electronic health records. Together, we will accomplish the following specific objectives:

1. Enhance network growth, diversity, and retention;
2. Build a robust network community, including patient governance structures that allow greater involvement of patients in research;
3. Expand the network database to include electronic health records, data from mHealth apps and devices, and biological samples;
4. Develop a customized, yet scalable and adaptable, distributed data network (i.e., virtual database) by repurposing NASA-built technology;
5. Develop and test patient and provider-focused tools that utilize individual patient data to improve health behaviors, healthcare decisions, and, ultimately, outcomes;
6. Further engage the scientific community through open collaboration and data sharing; and
7. Rapidly disseminate new knowledge to patients, enabling them to improve their health.

Our team is uniquely positioned to develop this IBD-focused network. The CCFA is the leading, non-profit IBD patient organization, founded in 1967 to "cure CD and UC and improve the quality of life of those affected." We have identified a highly engaged Patient Governance Committee and assembled an internationally recognized, multidisciplinary scientific team, representing disciplines of IBD basic science, epidemiology, computational mathematics, qualitative methods, patient-reported outcomes, health behavior design, computer programming, and bioinformatics.

Finally, as IBD is a model for other complex, chronic illnesses, we look forward to working collaboratively with other awardees to help develop a national patient-centered clinical research infrastructure.