Clinical Outcome Assessments in Pediatric Patients With Ulcerative Colitis and Crohn's Disease Receiving Biologics: A Retrospective Cohort Study

Published March 2022

Hunter T, Komocsar WJ, Liu C, Colletti RB, Steiner SJ, Dotson JL, Benkov K, Zhang N, Crandall W. 

To assess disease activity, steroid-free remission, and other clinical outcome assessments among pediatric patients with ulcerative colitis (UC) and Crohn's disease (CD) in the ImproveCareNow (ICN) registry.

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Building responsive governance for learning networks

Published April 2022

Porcaro K. Building responsive governance for learning networks. Learn Health Syst. 2021 Aug 5;6(2):e10288. doi: 10.1002/lrh2.10288. PMID: 35434358; PMCID: PMC9006526.

This article describes a strategic governance review of ImproveCareNow (ICN), a learning health network focused on improving clinical outcomes for adolescents with Crohn's disease and ulcerative colitis (IBD). ICN is organized around an "enhanced" patient registry and collaborative community of patients, parents, clinicians, and researchers.

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Overweight and obese status is not associated with disease activity for children and adolescents with newly diagnosed IBD

Published April 2022

Jain A, Bricker J, Kappelman MD, Dotson JL; ImproveCareNow Pediatric IBD Learning Health System. Overweight and obese status is not associated with disease activity for children and adolescents with newly diagnosed IBD. Am J Gastroenterol. 2022 Apr 26. doi: 10.14309/ajg.0000000000001803. Epub ahead of print. PMID: 35470288.

The aim of this study was to evaluate disease-related outcomes in overweight and obese children with CD and UC.

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Personalized Research on Diet in Ulcerative Colitis and Crohn's Disease (PRODUCE): A Series of N-of-1 Diet Trials

Published April 2022

Kaplan HC, Opipari-Arrigan L, Yang J, Schmid CH, Schuler CL, Saeed SA, Braly KL, Chang F, Murphy L, Dodds CM, Nuding M, Liu H, Pilley S, Stone J, Woodward G, Yokois N, Goyal A, Lee D, Yeh AM, Lee P, Gold BD, Molle-Rios Z, Zwiener RJ, Ali S, Chavannes M, Linville T, Patel A, Ayers T, Bassett M, Boyle B, Palomo P, Verstraete S, Dorsey J, Kaplan JL, Steiner SJ, Nguyen K, Burgis J, Suskind DL; ImproveCareNow Pediatric IBD Learning Health System. Personalized Research on Diet in Ulcerative Colitis and Crohn's Disease (PRODUCE): A Series of N-of-1 Diet Trials. Am J Gastroenterol. 2022 Apr 20. doi: 10.14309/ajg.0000000000001800. Epub ahead of print. PMID: 35442220.

Evidence about Specific Carbohydrate Diet (SCD) for inflammatory bowel disease (IBD) is limited. We conducted 54 single-subject, double-crossover N-of-1 trials comparing SCD to a modified SCD (MSCD) and comparing each to the participant's baseline, usual diet (UD).

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Web-Based Mindfulness-Based Interventions for Well-being: Randomized Comparative Effectiveness Trial

Published September 2022

Sylvia LG, Lunn MR, Obedin-Maliver J, McBurney RN, Nowell WB, Nosheny RL, Mularski RA, Long MD, Merkel PA, Pletcher MJ, Tovey RE, Scalchunes C, Sutphen R, Martin AS, Horn EJ, O'Boyle M, Pitch L, Seid M, Redline S, Greenebaum S, George N, French NJ, Faria CM, Puvanich N, Rabideau DJ, Selvaggi CA, Yu C, Faraone SV, Venkatachalam S, McCall D, Terry SF, Deckersbach T, Nierenberg AA. Web-Based Mindfulness-Based Interventions for Well-being: Randomized Comparative Effectiveness Trial. J Med Internet Res 2022

Mindfulness can improve overall well-being by training individuals to focus on the present moment without judging their thoughts. However, it is unknown how much mindfulness practice and training are necessary to improve well-being.

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Provider Knowledge and Recommendations Regarding Ileoanal Pouch Surgery and Fertility in Women with Ulcerative Colitis

Published September 2022

Taylor Boyd, BS, Rachel W Winter, MD, MPH, Harland S Winter, MD, Michele Kissous-Hunt, PA-C, Joel E Goldberg, MD, Thomas Frederick McElrath, MD, PhD, Sonia Friedman, MD

In this study, we aimed to assess health care providers’ general knowledge of the impact of the J-pouch procedure on female fertility.

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Treatment and biologic maintenance-dosing patterns among pediatric patients with ulcerative colitis or Crohn's disease

Published November 2022

Hunter T, Komocsar WJ, Colletti RB, Liu C, Benkov KJ, Dotson JL, Steiner SJ, Zhang N, Crandall W; ImproveCareNow Network. Treatment and biologic maintenance-dosing patterns among pediatric patients with ulcerative colitis or Crohn's disease. Curr Med Res Opin. 2022 Nov 7:1-7. doi: 10.1080/03007995.2022.2135836. Epub ahead of print. PMID: 36263735.

To assess treatment patterns and initial and maintenance dosing of biologics over 3 years in pediatric patients with ulcerative colitis (UC) or Crohn's disease (CD), utilizing data from the ImproveCareNow registry.

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Interpreting Patient-Reported Outcome Scores: Pediatric Inflammatory Bowel Disease as a Use Case

Published December 2022

Schuchard J, Carle AC, Kappelman MD, Tucker CA, Forrest CB; ImproveCareNow Pediatric IBD Learning Health System and COMBINE study team. Interpreting Patient-Reported Outcome Scores: Pediatric Inflammatory Bowel Disease as a Use Case. Acad Pediatr. 2022 Nov-Dec;22(8):1520-1528. doi: 10.1016/j.acap.2021.12.029. Epub 2022 Jan 5. PMID: 34995822; PMCID: PMC9253201.

To demonstrate how to interpret Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric patient-reported outcome measure (PROM) scores for patients with pediatric inflammatory bowel disease (IBD).

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