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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 

Additional links

Research Explained - on LOOP 

Abdominal Pain After Pediatric IBD Diagnosis on PubMed 

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

Additional links

Assessing the Prevalence of and Risk Factors for Disordered Eating Attitudes and Behaviors in Adolescents With Inflammatory Bowel Disease

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 

Additional links

Clinical Practice Survey of Repeat Endoscopy in Pediatric Inflammatory Bowel Disease in North America on PubMed 

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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 

More Information:

ImproveCareNow registry used to evaluate use of concomitant immunomodulators with adalimumab therapy in Crohn's Disease

Evaluation of adalimumab effectiveness in anti-tumor necrosis factor-naïve pediatric patients with Crohn's disease in clinical practice

Putting Data to Work to Answer Questions: Evaluation of Adalimumab Effectiveness

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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

More information:

Evaluation of adalimumab effectiveness in paediatric patients with ulcerative colitis in clinical practice

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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).

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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

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

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Co-Principal Investigators: 

Marc Schaefer, MD, MPH - Penn State Hershey Children’s Hospital

Jeanne Tung, MD - The Children’s Hospital at Oklahoma University

Purpose: Transition of care and transfer of care are two major areas of IBD care that should receive significant attention because they have major potential for quality improvement.  This survey will provide the ICN Transition of Care Task Force with more information about the number of centers providing transition education, the transition tools they are using, and how they are using these tools.  It will also provide us with information on transfer of care, such as what age patients are being transferred and how does the hand-off of clinical information occur at the time of transfer.

Primary/Secondary Outcomes:

  • Primary Outcome: Identify the centers in ImproveCareNow providing transition education
  • Secondary Outcome: Identify the centers in ImproveCareNow that have a transfer process for their patients

Study Period: Survey conducted in the fall of 2015.

Contact: Marc E. Schaefer, MD, MPH

Additional Links

Implementing Transition & Transfer of Care Systems in Pediatric IBD

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Purpose: Our goal for this study is to figure out the best way to collect information during a clinic visit about the current symptoms patients are experiencing and then use that information to improve the care patients receive during the visit.

Funding Source (Year Awarded): PCORI (2016)

Study Period: March 2017 – March 2019

Contact: ImproveCareNow Research

 

 

 

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Co- Investigators: David Suskind, MD, Shehzad Saeed, MD & Kimberly Braly, RD

Clinician Stakeholders: Jennifer Burgis, MD & Kaylie Nguyen, PNP

Parent Stakeholders: Sheri Pilley, Julie Stone, Gisele Woodward

Patient Stakeholders: Catalina Berenblum

Purpose: PRODUCE study, which stands for Personalized Research on Diet in Ulcerative Colitis and Crohn’s Disease, is a first of its kind nutrition intervention study in IBD. With evidence showing dietary intervention has an impact on disease activity for patients with IBD, the PRODUCE study aims to determine the effectiveness of the Specific Carbohydrate Diet (SCD) in reducing symptoms and inflammatory burden in patients with IBD and compare this to a modified form of the SCD. Over the course of this project, a series of N-of-1 studies will be used to examine how the SCD affects individual patients. In addition, we will combine the results of approximately 100 individual N-of-1 studies to look at the effectiveness of the SCD in the pediatric IBD population.

Primary Outcomes: Patient reported outcomes of:

  • Daily stool frequency
  • Daily stool consistency
  • Weekly PROMIS Pain Interference
  • Weekly PROMIS GI symptom severity
  • Fecal calprotectin

Secondary Outcomes: 

  • Short Crohn’s Disease Activity Index (SCDAI)
  • Clinically-evaluated disease activity scores and laboratory markers contained in ICN registry:
    • PUCAI and SPCDAI
    • Growth
    • CRP, HCT, Albumin, ESR
  • Microbiome analyses

Funding Source: Patient Centered Outcomes Research Institute (PCORI; Awarded January 2017)

Study Period: January 2017 – January 2020

Contact:

Heather Kaplan, MD, MSCE - Co-PI

Lisa Opipari-Arrigan, PhD - Co-PI 

Cassandra Dodds - Clinical Research Coordinator 

Lauren Murphy - Clinical Research Coordinator 

For More information:
Care Centers - Find a participating PRODUCE Center 
Blog posts
Publications

Study Authors: David, JBerenblum Tobi, CKennedy, S, 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 

Additional links

Research Explained on LOOP

Sustainable generation of patient‐led resources in a learning health system

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