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)
作者： Arlene E Chung , Robert S Sandler , Millie D Long , Sean Ahrens , Jessica L Burris
DOI: 10.1093/JAMIA/OCV191
关键词:
摘要: The Crohn’s and Colitis Foundation of America Partners Patient-Powered Research Network (PPRN) seeks to advance accelerate comparative effectiveness translational research in inflammatory bowel diseases (IBDs). Our IBD-focused PCORnet PPRN has been designed overcome the major obstacles that have limited patient-centered outcomes IBD by providing technical infrastructure, patient governance, patient-driven functionality needed to: 1) identify, prioritize, undertake a agenda through sharing person-generated health data; 2) develop test provider-focused tools utilize individual data improve behaviors inform care decisions and, ultimately, outcomes; 3) rapidly disseminate new knowledge patients, enabling them their health. fostered development community citizen scientists IBD; created portal will recruit, retain, engage members encourage partnerships with external scientists; produced an efficient infrastructure for identifying, screening, contacting network participation research.
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Patricia D. Jones, Michael Kappelman, Christopher F. Martin, Wenli Chen, Robert S. Sandler, Millie D. Long, Mo1351 Association Between Exercise and Future Flares in an Inflammatory Bowel Disease Population in Remission Gastroenterology. ,vol. 144, pp. S- 644 ,(2013) , 10.1016/S0016-5085(13)62384-7
Michael D. Kappelman, Millie D. Long, Christopher Martin, Darren A. DeWalt, Patricia M. Kinneer, Wenli Chen, James D. Lewis, Robert S. Sandler, Evaluation of the patient-reported outcomes measurement information system in a large cohort of patients with inflammatory bowel diseases. Clinical Gastroenterology and Hepatology. ,vol. 12, pp. 1315- 1323 ,(2014) , 10.1016/J.CGH.2013.10.019
A Ferguson, D M Sedgwick, J Drummond, Morbidity of juvenile onset inflammatory bowel disease: effects on education and employment in early adult life. Gut. ,vol. 35, pp. 665- 668 ,(1994) , 10.1136/GUT.35.5.665
Aaron B. Cohen, Dale Lee, Millie D. Long, Michael D. Kappelman, Christopher F. Martin, Robert S. Sandler, James D. Lewis, Dietary Patterns and Self-Reported Associations of Diet with Symptoms of Inflammatory Bowel Disease Digestive Diseases and Sciences. ,vol. 58, pp. 1322- 1328 ,(2013) , 10.1007/S10620-012-2373-3
Millie D. Long, R. Jean Cadigan, Suzanne F. Cook, Kaaren Haldeman, Kriste Kuczynski, Robert S. Sandler, Christopher F. Martin, Wenli Chen, Michael D. Kappelman, Perceptions of patients with inflammatory bowel diseases on biobanking. Inflammatory Bowel Diseases. ,vol. 21, pp. 132- 138 ,(2015) , 10.1097/MIB.0000000000000263
Teresa Longobardi, Philip Jacobs, Charles N. Bernstein, Work losses related to inflammatory bowel disease in the United States: Results from the National Health Interview Survey The American Journal of Gastroenterology. ,vol. 98, pp. 1064- 1072 ,(2003) , 10.1111/J.1572-0241.2003.07285.X
Millie D. Long, Michael D. Kappelman, Christopher F. Martin, James D. Lewis, Lloyd Mayer, Patricia M. Kinneer, Robert S. Sandler, Development of an internet-based cohort of patients with inflammatory bowel diseases (CCFA Partners): methodology and initial results. Inflammatory Bowel Diseases. ,vol. 18, pp. 2099- 2106 ,(2011) , 10.1002/IBD.22895
Rachel L. Randell, Millie D. Long, Suzanne F. Cook, Christina E. D. Wrennall, Wenli Chen, Christopher F. Martin, Kristen Anton, Robert S. Sandler, Michael D. Kappelman, Validation of an Internet-Based Cohort of Inflammatory Bowel Disease (CCFA Partners) Inflammatory Bowel Diseases. ,vol. 20, pp. 541- 544 ,(2014) , 10.1097/01.MIB.0000441348.32570.34
Hans H. Herfarth, Christopher F. Martin, Robert S. Sandler, Michael D. Kappelman, Millie D. Long, Prevalence of a gluten free diet and improvement of clinical symptoms in patients with inflammatory bowel diseases Inflammatory Bowel Diseases. ,vol. 20, pp. 1194- 1197 ,(2014) , 10.1097/MIB.0000000000000077
Michael D. Kappelman, Sheryl L. Rifas–Shiman, Carol Q. Porter, Daniel A. Ollendorf, Robert S. Sandler, Joseph A. Galanko, Jonathan A. Finkelstein, Direct health care costs of Crohn's disease and ulcerative colitis in US children and adults. Gastroenterology. ,vol. 135, pp. 1907- 1913 ,(2008) , 10.1053/J.GASTRO.2008.09.012