The Development and Initial Findings of A Study of a Prospective Adult Research Cohort with Inflammatory Bowel Disease (SPARC IBD). Issue 2 (26th August 2021)

• Record Type: Journal Article
• Authors: Raffals, Laura E; Saha, Sumona; Bewtra, Meenakshi; Norris, Cecile; Dobes, Angela; Heller, Caren; O'Charoen, Sirimon; Fehlmann, Tara; Sweeney, Sara; Weaver, Alandra; Bishu, Shrinivas; Cross, Raymond; Dassopoulos, Themistocles; Fischer, Monika; Yarur, Andres; Hudesman, David; Parakkal, Deepak; Duerr, Richard; Caldera, Freddy; Korzenik, Joshua; Pekow, Joel; Wells, Katerina; Bohm, Matthew; Perera, Lilani; Kaur, Manreet; Ciorba, Matthew; Snapper, Scott; Scoville, Elizabeth A; Dalal, Sushila; Wong, Uni; Lewis, James D;
• Is Part Of: Inflammatory bowel diseases. Volume 28:Issue 2(2022)
• Page Start: 192
• Page End: 199
• Publication Date: 2021-08-26
• Subjects: inflammatory bowel disease -- Crohn's disease -- ulcerative colitis -- biobank -- precision medicine; Inflammatory bowel diseases -- Periodicals; Colitis, Ulcerative -- Periodicals; Crohn Disease -- Periodicals; Inflammatory Bowel Diseases -- Periodicals; 616.344
• DOI: 10.1093/ibd/izab071
• Languages: English
• ISSNs: 1078-0998

Abstract

Abstract: Background: Clinical and molecular subcategories of inflammatory bowel disease (IBD) are needed to discover mechanisms of disease and predictors of response and disease relapse. We aimed to develop a study of a prospective adult research cohort with IBD (SPARC IBD) including longitudinal clinical and patient-reported data and biosamples. Methods: We established a cohort of adults with IBD from a geographically diverse sample of patients across the United States with standardized data and biosample collection methods and sample processing techniques. At enrollment and at time of lower endoscopy, patient-reported outcomes (PRO), clinical data, and endoscopy scoring indices are captured. Patient-reported outcomes are collected quarterly. The quality of clinical data entry after the first year of the study was assessed. Results: Through January 2020, 3029 patients were enrolled in SPARC, of whom 66.1% have Crohn's disease (CD), 32.2% have ulcerative colitis (UC), and 1.7% have IBD-unclassified. Among patients enrolled, 990 underwent colonoscopy. Remission rates were 63.9% in the CD group and 80.6% in the UC group. In the quality study of the cohort, there was 96% agreement on year of diagnosis and 97% agreement on IBD subtype. There was 91% overall agreement describing UC extent as left-sided vs extensive or pancolitis. The overall agreement for CD behavior was 83%. Conclusion: The SPARC IBD is an ongoing large prospective cohort with longitudinal standardized collection of clinical data, biosamples, and PROs representing a unique resource aimed to drive discovery of clinical and molecular markers that will meet the needs of precision medicine in IBD.