Laura E Raffals1, Sumona Saha2, Meenakshi Bewtra3, Cecile Norris4, Angela Dobes4, Caren Heller4, Sirimon O'Charoen4, Tara Fehlmann4, Sara Sweeney4, Alandra Weaver4, Shrinivas Bishu5, Raymond Cross6, Themistocles Dassopoulos7, Monika Fischer8, Andres Yarur9, David Hudesman10, Deepak Parakkal11, Richard Duerr12, Freddy Caldera2, Joshua Korzenik13, Joel Pekow14, Katerina Wells7, Matthew Bohm8, Lilani Perera15, Manreet Kaur16, Matthew Ciorba11, Scott Snapper17, Elizabeth A Scoville18, Sushila Dalal14, Uni Wong6, James D Lewis3. 1. Mayo Clinic, Rochester, Minnesota, USA. 2. University of Wisconsin School of Medicine and Public Health, Madison, Wisconsin, USA. 3. Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania, USA. 4. Crohn's & Colitis Foundation, New York, New York, USA. 5. University of Michigan, Ann Arbor, Michigan, USA. 6. University of Maryland School of Medicine, Baltimore, Maryland, USA. 7. Baylor Scott and White Health and Baylor University Medical Center at Dallas, TX, USA. 8. Indiana University, Indianapolis, Indiana, USA. 9. Medical College of Wisconsin, Milwaukee, Wisconsin, USA. 10. New York University Langone Health, New York, New York, USA. 11. Washington University in St. Louis School of Medicine, St. Louis, Missouri, USA. 12. University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania, USA. 13. Brigham and Women's Hospital, Boston, Massachusetts, USA. 14. University of Chicago, Chicago, Illinois, USA. 15. Advocate Aurora Healthcare, Milwaukee, Wisconsin, USA. 16. Baylor College of Medicine, Houston, Texas, USA. 17. Boston Children's Hospital and Brigham and Women's Hospital, Boston, Massachusetts, USA. 18. Vanderbilt University Medical Center, Nashville, Tennessee, USA.
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.
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.
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