Harnessing person-generated health data to accelerate patient-centered outcomes research: the Crohn's and Colitis Foundation of America PCORnet Patient Powered Research Network (CCFA Partners)

The Crohn's and Colitis Foundation of America Partners Patient-Powered Research Network (PPRN) seeks to advance and accelerate comparative effectiveness and translational research in inflammatory bowel diseases (IBDs). Our IBD-focused PCORnet PPRN has been designed to overcome the major obstacles that have limited patient-centered outcomes research in IBD by providing the technical infrastructure, patient governance, and patient-driven functionality needed to: 1) identify, prioritize, and undertake a patient-centered research agenda through sharing person-generated health data; 2) develop and test patient and provider-focused tools that utilize individual patient data to improve health behaviors and inform health care decisions and, ultimately, outcomes; and 3) rapidly disseminate new knowledge to patients, enabling them to improve their health. The Crohn's and Colitis Foundation of America Partners PPRN has fostered the development of a community of citizen scientists in IBD; created a portal that will recruit, retain, and engage members and encourage partnerships with external scientists; and produced an efficient infrastructure for identifying, screening, and contacting network members for participation in research.

[1]  R D Cohen,et al.  The quality of life in patients with Crohn's disease , 2002, Alimentary pharmacology & therapeutics.

[2]  Christopher F. Martin,et al.  Prevalence of a Gluten-free Diet and Improvement of Clinical Symptoms in Patients with Inflammatory Bowel Diseases , 2014, Inflammatory bowel diseases.

[3]  Robert S. Sandler,et al.  Dietary Patterns and Self-Reported Associations of Diet with Symptoms of Inflammatory Bowel Disease , 2013, Digestive Diseases and Sciences.

[4]  A. Ferguson,et al.  Morbidity of juvenile onset inflammatory bowel disease: effects on education and employment in early adult life. , 1994, Gut.

[5]  Michael D. Kappelman,et al.  Recent Trends in the Prevalence of Crohn’s Disease and Ulcerative Colitis in a Commercially Insured US Population , 2012, Digestive Diseases and Sciences.

[6]  Kristen Anton,et al.  Validation of an Internet-Based Cohort of Inflammatory Bowel Disease (CCFA Partners) , 2014, Inflammatory bowel diseases.

[7]  Julia Salleron,et al.  Natural history of pediatric Crohn's disease: a population-based cohort study. , 2008, Gastroenterology.

[8]  Christopher F. Martin,et al.  Evaluation of the patient-reported outcomes measurement information system in a large cohort of patients with inflammatory bowel diseases. , 2014, Clinical gastroenterology and hepatology : the official clinical practice journal of the American Gastroenterological Association.

[9]  A. Akobeng,et al.  Quality of life in children with Crohn's disease: a pilot study. , 1999, Journal of pediatric gastroenterology and nutrition.

[10]  R. Sandler,et al.  Immunization Rates and Vaccine Beliefs Among Patients with Inflammatory Bowel Disease: An Opportunity for Improvement , 2014, Inflammatory bowel diseases.

[11]  Robert S. Sandler,et al.  Mo1351 Association Between Exercise and Future Flares in an Inflammatory Bowel Disease Population in Remission , 2013 .

[12]  David C Wilson,et al.  Definition of phenotypic characteristics of childhood-onset inflammatory bowel disease. , 2008, Gastroenterology.

[13]  Christopher F. Martin,et al.  Perceptions of Patients with Inflammatory Bowel Diseases on Biobanking , 2015, Inflammatory bowel diseases.

[14]  Richard Platt,et al.  Launching PCORnet, a national patient-centered clinical research network , 2014, Journal of the American Medical Informatics Association : JAMIA.

[15]  Christopher F. Martin,et al.  Sleep disturbance and risk of active disease in patients with Crohn's disease and ulcerative colitis. , 2013, Clinical gastroenterology and hepatology : the official clinical practice journal of the American Gastroenterological Association.

[16]  Christopher F. Martin,et al.  Development of an internet‐based cohort of patients with inflammatory bowel diseases (CCFA Partners): Methodology and initial results , 2011, Inflammatory bowel diseases.

[17]  J. Cangemi,et al.  Racial/Ethnic and Regional Differences in the Prevalence of Inflammatory Bowel Disease in the United States , 2013, Digestion.

[18]  C. Porter,et al.  Direct health care costs of Crohn's disease and ulcerative colitis in US children and adults. , 2008, Gastroenterology.

[19]  Kristen Anton,et al.  Patient Perception of Chronic Illness Care in a Large Inflammatory Bowel Disease Cohort , 2013, Inflammatory bowel diseases.

[20]  Philip Jacobs,et al.  Work losses related to inflammatory bowel disease in the United States: Results from the National Health Interview Survey , 2003, American Journal of Gastroenterology.