ImproveCareNow Coproduction
ICN Research Explained: The association between erythema nodosum and pyoderma gangrenosum and pediatric inflammatory bowel disease
The objectives of this study are to estimate rates and identify factors associated with erythema nodosum (EN) and pyoderma gangrenosum (PG) in pediatric patients with inflammatory bowel disease (IBD).
PAC Moment - New patient-developed one-page resources
Patient Advisory Council members have been crowdsourcing their wisdom, tips, and tricks about IBD topics that are timely and important to them. Using their insights, they have been developing brief, helpful one-pagers that are then reviewed by various members of the ICN community such as dietitians and psychosocial providers. Take a PAC Moment to check out new patient-developed resources!
Fall 2024 Community Conference - Together We Can: Collaborate, Coproduce, Catalyze
We are excited to be hosting our Fall 2024 Community Conference in Baltimore, Maryland from September 25 to September 27. We look forward to engaging with healthcare providers, patients, parents/caregivers, researchers and improvers from across ImproveCareNow to all teach and all learn, to share and develop new and innovative approaches to improve pediatric IBD care and outcomes, to further our research, and to build our community. Download our draft agenda to check out topics and sessions for this event ⬇⬇
ICN Research Explained: Diagnosis change in pediatric inflammatory bowel disease
This study aims to characterize pediatric inflammatory bowel disease (IBD) patients who change diagnosis and describe the characteristics of that change.
ICN Research Explained: Is it "all in the bag?" Multidisciplinary perspectives on ostomy surgery in pediatric IBD across the ImproveCareNow network
Pediatric inflammatory bowel disease (IBD) is a chronic illness with various treatments, including ostomy surgery. Ostomy‐related medical decision‐making (MDM) is complex for multidisciplinary healthcare professionals (HCPs). This study sought to understand national multidisciplinary HCPs' perceptions about pediatric IBD ostomy surgery in the United States.
Partnering for better pediatric IBD outcomes
ImproveCareNow (ICN) believes that when patients and caregivers are true partners in the design and delivery of their IBD care, we can achieve even better outcomes. One way our learning health network fosters this commitment to partnering with our pediatric IBD families is through our Community Conference scholarship program. Scholarships allow patients and/or caregivers to attend our in-person meetings at no cost to them.
ICN Research Explained: Pediatric GI Health Care Professionals’ Perceptions of and Engagement with Psychosocial Providers in Pediatric IBD Care
Why was this study done?
Pediatric patients with IBD have a higher rate of psychosocial needs than young people without IBD, including anxiety, low mood, fatigue, and body image complexities. Multidisciplinary care, including psychosocial providers (psychologists, social workers), is considered the standard of care in pediatric IBD. However, there is limited research exploring how medical providers (e.g., physicians) think about and engage with psychosocial providers in pediatric IBD.
ICN Research Explained: the COMBINE Trial
What was the key study finding?
The COMBINE study compared the treatment of pediatric Crohn’s disease with an anti-TNF biologic alone versus an anti-TNF biologic combined with low-dose oral methotrexate. The study found that adding methotrexate reduced the risk of treatment failure for adalimumab, but not for infliximab. Methotrexate did lead to more side effects, but these were mostly mild and rarely led to the stopping of treatment.
Our top 10 blog posts of 2022
LOOP is an important place for our community to keep #TalkingAboutIBD. It’s a place where #StoriesMatter - where they connect us, build confidence, validate our experiences, remind us we are not alone, and motivate us to continue improving together.
So far, in 2022, 41 stories have been published by patients, caregivers, clinicians, collaborators, researchers, staff & leaders from across the ICN community sharing their unique perspectives on and experiences with IBD. Our top stories this year have covered a variety of topics, including: research on diet and fatigue, innovative IBD projects, new member introductions and top tips for newly-diagnosed patients, conversations about medical trauma, collaborating with IBD caregivers, and gratitude for leadership and learning together so we can all improve the health and care of people living with IBD.
Fall 2022 ImproveCareNow Community Conference - Re-Emerging Stronger Than Ever
We are excited to be hosting our Fall 2022 Community Conference in Dallas, TX later this month. This will be our first in-person event since moving to a Live Online format in Spring 2020 in response to the onset of the COVID-19 pandemic. September 21-23 we look forward to engaging with healthcare providers, patients and parents from across ImproveCareNow to all teach and all learn about recent results in our pediatric IBD research and improvement efforts. Download our draft agenda to preview the full conference schedule ⬇⬇