Achieving Synergy: Linking an Internet-Based Inflammatory Bowel Disease Cohort to a Community-Based Inception Cohort and Multicentered Cohort in Inflammatory Bowel Disease.
Bharati KocharMolly AldridgeSuzanne Follan CookRenee BrightMeaghan MalletteHeather MonizSamir A ShahNeal S LeLeikoJason M ShapiroBruce E SandsWenli ChenElizabeth L JaegerJoseph A GalankoMillie D LongChristopher F MartinRobert S SandlerMichael D KappelmanPublished in: Journal of medical Internet research (2016)
Linkage of CCFA Partners with cohorts such as OSCCAR and SHARE may be a cost-effective way to expand the infrastructure for clinical outcomes and translational research. Although linkage is feasible from a technical, legal, and regulatory perspective, participant willingness appears to be a limiting factor. Overcoming this barrier will be needed to generate meaningful sample sizes to conduct studies of biomarkers, natural history, and clinical effectiveness using linked data.