Purpose: With data from the ImproveCareNow Registry, we aim to determine the trajectory, risk factors, and impact of abdominal pain in youth with IBD during the first year after diagnosis. We hope that findings from this study may inform future screening and intervention approaches for youth with IBD with persistent abdominal pain.
Primary Outcome: Abdominal pain
Study Period: Jan-Dec 2019
Recruitment Status: This study makes use of existing data in the ICN registry. No patient recruitment at this time.
Contact: ImproveCareNow Research
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Research Explained - on LOOP
Study Authors: Jennie G David, PhD, Douglas Chute, PhD, Bonney Reed, PhD, Shehzad Saeed, MD, David DeMatteo, JD, PhD, Orhan Atay, MD, Michele Maddux, PhD, Brian Daly, PhD
Study Period: 2017-2021
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Study Authors: Moses J, Sandberg K, Winberry G, Riera D, DeLozier S, Gupta SK, Reilly N, Park KT, Picoraro J.
Purpose: Endoscopic remission has become a standard treatment target in inflammatory bowel disease (IBD). It is unclear how widely this practice has been adopted amongst pediatric gastroenterology providers. This study determines the frequency of repeat endoscopy in pediatric IBD and evaluates for predictive baseline characteristics of providers.
Study Period: Dec 2019-Dec 2020
Publication: Moses J, Sandberg K, Winberry G, Riera D, DeLozier S, Gupta SK, Reilly N, Park KT, Picoraro J. Clinical Practice Survey of Repeat Endoscopy in Pediatric Inflammatory Bowel Disease in North America. J Pediatr Gastroenterol Nutr. 2021 Feb 24. doi: 10.1097/MPG.0000000000003100. Epub ahead of print. PMID: 33633082.
Contact: ImproveCareNow Research
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Purpose: This study uses data from the ImproveCareNow Registry to examine the duration and effectiveness of Adalimumab therapy in pediatric Crohn’s Disease within the ICN network. This knowledge is an important step in learning how to optimize the use of Adalimumab.
Funding Source: AbbVie (2016)
Study Period: 2015-2017
Recruitment Status: This study makes use of existing data in the ICN registry.
Contact: ImproveCareNow Research
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Putting Data to Work to Answer Questions: Evaluation of Adalimumab Effectiveness
Purpose: By using data that exists in the ImproveCareNow Registry, this study aims to measure the duration and effect of adalimumab on clinical outcomes in pediatric ulcerative colitis patients in the clinical practice setting. This study will add to the knowledge about the use of adalimumab as therapy in the management of pediatric ulcerative colitis.
Funding Source (Year Awarded): AbbVie (2016)
Study Period: 2016-2017
Recruitment Status: This study makes use of existing data in the ICN registry.
Contact: ImproveCareNow Research
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Purpose: The GROWING study, which stands for Predictors of continued statural GROWth IN older adolescents and younG adults with Crohn’s disease and ulcerative colitis, aims to determine the prevalence of continued growth and to quantify total height gain and height velocity in older adolescents and young adults with Crohn’s disease and ulcerative colitis after the chronological age of expected growth plate closure. We will determine predictors and associative factors of continued growth in these patients.
Funding Source (Year Awarded): Celgene (September 2016)
Study Period: February – December 2017
Recruitment Status: No longer recruiting participants
Publication:
Gupta N, Liu C, King E, Sylvester F, Lee D, Boyle B, Trauernicht A, Chen S, Colletti R, ImproveCareNow Network . Continued statural growth in older adolescents and young adults with Crohn's disease and ulcerative colitis beyond the time of expected growth plate closure. Inflamm Bowel Dis 2020
Determined the frequency of continued growth and compared the total height gain beyond the time of expected growth plate closure and the chronological age at achievement of final adult height in Crohn's disease (CD) vs ulcerative colitis (UC) and described height velocity curves in inflammatory bowel disease (IBD) compared with children in the National Health and Nutrition Examination Survey (NHANES).
Purpose: This study is investigating whether obesity is associated with worsening disease outcomes in children with Crohn’s disease. In particular, we will be reviewing data from ICN to see if children with newly diagnosed Crohn’s disease had differing Crohn’s disease outcomes at 1 year based on weight status (obese, overweight, normal weight). The results of this study could help understand whether obesity impacts Crohn’s disease, which could be a potential treatment goal for children.
Primary/Secondary Outcomes:
- Primary Outcomes: Proportion of children in Crohn’s disease remission at 1 year
- Secondary Outcomes: Growth, laboratory markers of Crohn’s disease (such as sedimentation rate and blood count), steroid free remission, and disease activity based on objective indices all at 1 year.
Contact: Animesh Jain
Study Authors: Kandavel, Prashanthi; Eder, Sally J.; Adler, Jeremy
Study Period: 2018-2020
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Research Explained on LOOP
Study Authors: , , , et al.
Purpose: This paper, written by patients and providers from ICN, reviews current ICN data on PAC‐generated resources, including creation processes and download statistics.
Study Period: Jul 2020-Feb 2021
Publication: David, J, Berenblum Tobi, C, Kennedy, S, et al. Sustainable generation of patient‐led resources in a learning health system. Learn Health Sys. 2021;e10260. https://doi.org/10.1002/lrh2.10260
Contact: ImproveCareNow Research
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Research Explained on LOOP
Sustainable generation of patient‐led resources in a learning health system
Study Authors: Miller TL, Schuchard J, Carle AC, Forrest CB, Kappelman MD; COMBINE Study Group
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