Published Studies
Year | Publication | Categories |
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2016 |
Achieving Synergy: Linking an Internet-Based Inflammatory Bowel Disease Cohort to a Community-Based Inception Cohort and Multicentered Cohort in Inflammatory Bowel Disease
Summary Cohort studies follow groups of people to understand disease. They are difficult to organize and often do not focus on patient-reported outcomes. Internet-based cohort studies provide new opportunities to study patient-reported outcomes; they are also efficient and can easily include large numbers of people. Linking an Internet-based cohort study, like CCFA-Partners, to a traditional cohort study can be beneficial to both studies and add a tremendous amount of information about a disease. Therefore, we aimed to link CCFA-Partners with the Ocean State Crohn's and Colitis Area Registry (OSCCAR) and The Sinai-Helmsley Alliance for Research Excellence (SHARE), both of which are traditional cohort studies. OSCCAR is a cohort of patients with inflammatory bowel disease (IBD) in Rhode Island. SHARE is a cohort across 7 academic medical centers around the United States. Both cohorts collect specimens, like blood and stool, from participants. OSCCAR enrolled people with IBD from 2008 to 2013. SHARE started enrolling people with IBD in July 2012 and enrollment is continuing. People in the cohorts who had access to the Internet were told about CCFA-Partners by the study coordinators and encouraged to enroll. Full Published Manuscript Keywords cohort; Crohn's Disease; Crohn's; CD; population; patient-reported outcomes; symptoms; physical health; social health; psychosocial health; |
Research Methods, Study Updates, Health Maintenance |