The Development and Initial Findings of A Study of a Prospective Adult Research Cohort with Inflammatory Bowel Disease (SPARC IBD)

Laura E. Raffals, Sumona Saha, Meenakshi Bewtra, Cecile Norris, Angela Dobes, Caren Heller, Sirimon O'Charoen, Tara Fehlmann, Sara Sweeney, Alandra Weaver, Shrinivas Bishu, Raymond Cross, Themistocles Dassopoulos, Monika Fischer, Andres Yarur, David Hudesman, Deepak Parakkal, Richard Duerr, Freddy Caldera, Joshua KorzenikJoel Pekow, Katerina Wells, Matthew Bohm, Lilani Perera, Manreet Kaur, Matthew Ciorba, Scott Snapper, Elizabeth A. Scoville, Sushila Dalal, Uni Wong, James D. Lewis

Research output: Contribution to journalArticlepeer-review

9 Scopus citations


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.

Original languageEnglish
Pages (from-to)192-199
Number of pages8
JournalInflammatory bowel diseases
Issue number2
StatePublished - Feb 1 2022


  • Crohn's disease
  • biobank
  • inflammatory bowel disease
  • precision medicine
  • ulcerative colitis


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