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. 2022 Feb 1;28(2):192-199.
doi: 10.1093/ibd/izab071.

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

Laura E Raffals  1 , Sumona Saha  2 , Meenakshi Bewtra  3 , Cecile Norris  4 , Angela Dobes  4 , Caren Heller  4 , Sirimon O'Charoen  4 , Tara Fehlmann  4 , Sara Sweeney  4 , Alandra Weaver  4 , Shrinivas Bishu  5 , Raymond Cross  6 , Themistocles Dassopoulos  7 , Monika Fischer  8 , Andres Yarur  9 , David Hudesman  10 , Deepak Parakkal  11 , Richard Duerr  12 , Freddy Caldera  2 , Joshua Korzenik  13 , Joel Pekow  14 , Katerina Wells  7 , Matthew Bohm  8 , Lilani Perera  15 , Manreet Kaur  16 , Matthew Ciorba  11 , Scott Snapper  17 , Elizabeth A Scoville  18 , Sushila Dalal  14 , Uni Wong  6 , James D Lewis  3
Affiliations

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

Laura E Raffals et al. Inflamm Bowel Dis. .

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.

Keywords: Crohn’s disease; biobank; inflammatory bowel disease; precision medicine; ulcerative colitis.

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Figures

Figure 1.
Figure 1.
Foundation-supported IBD research and quality of care programs and IBD plexus.
Figure 2.
Figure 2.
IBD plexus and SPARC IBD patient data flow.
See this image and copyright information in PMC

References

    1. Dahlhamer JM, Zammitti EP, Ward BW, et al. Prevalence of inflammatory bowel disease among adults aged ≥18 years—United States, 2015. MMWR Morb Mortal Wkly Rep. 2016;65:1166–1169. - PubMed
    1. Ng SC, Shi HY, Hamidi N, et al. Worldwide incidence and prevalence of inflammatory bowel disease in the 21st century: a systematic review of population-based studies. Lancet. 2017;390:2769–2778. - PubMed
    1. Silverberg MS, Satsangi J, Ahmad T, et al. Toward an integrated clinical, molecular and serological classification of inflammatory bowel disease: report of a Working Party of the 2005 Montreal World Congress of Gastroenterology. Can J Gastroenterol. 2005;19 Suppl A:5A–36A. - PubMed
    1. Mosli MH, Sandborn WJ, Kim RB, et al. Toward a personalized medicine approach to the management of inflammatory bowel disease. Am J Gastroenterol. 2014;109:994–1004. - PubMed
    1. Sands BE. Biomarkers of inflammation in inflammatory bowel disease. Gastroenterology. 2015;149:1275–1285.e2. - PubMed

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