![]() IBD Plexus provides the infrastructure and platform to house, organize, aggregate, and disseminate data and provides a researcher portal to maximize use of these data and samples. The priorities of this effort are to recruit a geographically diverse sample of patients with IBD across the United States and standardize data and sample collection methods and sample processing techniques to enable rapid sharing of data and knowledge. The principal objectives of SPARC IBD are to identify clinical and molecular predictors of response to therapy and relapse of disease to develop precision medicine strategies and new treatment targets and biomarkers. 8–10 This analysis also identified a gap in its existing programs that was the catalyst to create SPARC IBD to include prospectively collected clinical data, patient-reported outcomes, and serially collected biosamples from adult patients with IBD over the course of their disease. The conception and development of IBD Plexus was the result of a partnership of the Foundation and academic and industry researchers after an extensive landscape analysis, which identified an opportunity to integrate the data and biosamples being collected in Foundation-supported IBD research and quality of care programs (IBD Partners, Risk Stratification in Crohn’s Disease, and IBD Qorus Fig. IBD Plexus is a robust research information exchange platform designed to accelerate discovery, clinical research development, safety and surveillance, and outcomes research in IBD. The data and biosamples collected from SPARC IBD, a longitudinal research cohort, reside in IBD Plexus. Additionally, we describe the characteristics of the study cohort and the results of a phenotyping data quality exercise. Herein, we describe the development and implementation of Study of a Prospective Adult Research Cohort with Inflammatory Bowel Disease (SPARC IBD), a prospective cohort of well-phenotyped adult IBD patients with longitudinal clinical and patient-reported data and biosamples, initiated by the Crohn’s & Colitis Foundation (Foundation). These challenges include best practices to ensure standardization across participating sites and legal and ethical concerns surrounding sharing of clinical data and biosamples. Multi-institutional biobanks are capable of building larger biorepositories but face numerous challenges due to the multitude of stakeholders participating in these endeavors. Large populations are needed to develop precise clinical and molecular subcategories of IBD. One approach to achieve this goal is to assemble large-scale databases that combine high-resolution clinical and patient-reported data with molecular data derived from biosamples to discover mechanisms of disease and predictors of response and disease relapse. 4–7 However, despite the growing therapeutic options for IBD, better tools are needed to personalize our treatment approach to determine the most effective treatment for each individual patient based on specific disease characteristics. Significant breakthroughs have led to new and effective treatments for IBD. 3 Within each disease subtype, there is heterogeneity of disease location, behavior, severity, and responsiveness to therapy, preventing a “one-size-fits-all” approach to treatment. Inflammatory bowel disease comprises 2 main subtypes: Crohn’s disease (CD) and ulcerative colitis (UC) 2 the term IBD unclassified (IBD-U) is reserved for those in whom it is not possible to distinguish between CD and UC due to overlapping features. 1 While recent epidemiologic studies suggest the incidence of IBD in western countries is stabilizing, the incidence is rapidly increasing in newly industrialized countries and may approximate those of the western hemisphere in the 20th century, suggesting that the global burden of IBD will continue to grow over the next century. Inflammatory bowel disease (IBD), a chronic, relapsing and remitting, inflammatory disorder of the gastrointestinal tract, is estimated to affect 3.1 million Americans. ![]()
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