ImproveCareNow is transforming care, health and costs for all children and youth with IBD through continuous improvement, innovation and discovery. Here are some of the events and opportunities happening in ImproveCareNow
Parent / Family Advisory Council - May 2024
We invite Parents & Caregivers of kids living with IBD to the May Parent / Family Advisory Council meeting on Monday, May 13, 7 - 8 p.m. ET (4 - 5 p.m. PT).
We will be joined this meeting by the Crohn’s and Colitis Foundation who will share and answer questions about Camp Oasis.
Camp Oasis is a supportive environment where children living with IBD make friends, learn more about their disease, and have lots of fun. You can read more about the impact of Camp Oasis for kids and families here.
Click here to sign up for the webinar (choose the May 13 call when registering). If you already receive emails from the PFAC, you can register and join the May call as you normally would do.
Fall 2024 Community Conference
Save the Date for the Fall 2024 Community Conference on September 25 - 27 in Baltimore, MD.
The hotel block at the Marriott Baltimore Waterfront is now open. Book your reservation by September 6, 2024.
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ImproveCareNow is made up of more than 100 care centers and has a presence on three continents, with 90% of the highest ranked pediatric gastroenterology programs in the U.S., including many U.S. News and World Reports 2023/2024 Honor Roll Children’s Hospitals as members. With 950 pediatric gastroenterologists and 30,000 IBD patients, ImproveCareNow reaches approximately 55% of IBD patients in the U.S. cared for by pediatric gastroenterologists. ImproveCareNow Community Conferences present the ideal opportunity to engage with these committed healthcare providers, patients and parents, and to learn about recent results in our research and improvement efforts.
If you would like to support ImproveCareNow and these efforts, please download our Fall 2024 Live Online Community Conference Supporter & Exhibitor Prospectus.
Spring 2025 Live Online Community Conference
Save the Date for the Spring 2025 Live Online Community Conference on April 24, 2025. Exact time of event TBD and subject to change.
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ImproveCareNow is made up of more than 100 care centers and has a presence on three continents, with 90% of the highest ranked pediatric gastroenterology programs in the U.S., including many U.S. News and World Reports 2023/2024 Honor Roll Children’s Hospitals as members. With 950 pediatric gastroenterologists and 30,000 IBD patients, ImproveCareNow reaches approximately 55% of IBD patients in the U.S. cared for by pediatric gastroenterologists. ImproveCareNow Community Conferences present the ideal opportunity to engage with these committed healthcare providers, patients and parents, and to learn about recent results in our research and improvement efforts.
Examination of the perceived impact, utility, and effectiveness of a shared decision-making tool for surgery in pediatric Inflammatory Bowel Disease
The goal of this study is to understand the past experiences of patients, parents, and doctors who have used or viewed ICN’s "Should I have IBD Surgery?" shared decision-making tool (IBD Surgery Shared Decision-Making Toolkit - ImproveCareNow). The virtual patient tool was created to help families and patients identify their concerns, preferences and resources when considering IBD surgery. The tool provides doctors with suggestions on how to incorporate the tool into the patient’s plan of care. Using this tool gives patients and families the opportunity to involve their doctors and care teams in shared decision-making (SDM).
The research team hopes that this study will provide an understanding of the impact, usefulness, and effectiveness of this tool for providers and for pediatric IBD patients considering surgery.
Click here if you are a provider or advanced practice practitioner
Click here if you are a patient or parent
PI: Kelly Sandberg, MD, MSc
An Exploration of How Health Care Professionals Assess and Support Sleep and Fatigue in a Pediatric IBD Population: Health Care Professional Survey
Health Care Professional Survey
Pediatric patients with IBD can have challenges with fatigue (feeling tired a lot of the time) and difficulties with sleep. While fatigue and sleep are known to be important factors in supporting optimal psychosocial and medical outcomes in pediatric IBD, it is unknown how these topics are talked about in IBD care with patients.
This study hopes to understand 1) the current ways that health care professionals (HCPs) are talking about and helping with fatigue and sleep in pediatric IBD, and 2) the self-reported experience of fatigue and sleep in pediatric patients with IBD.
Health care professionals (including GIs, APN/NP/PAs, nurses, psychologists, social workers, and dietitians) who care for pediatric IBD patients are eligible to participate. Participants can complete a one-time secure, online survey that is estimated to take 10-20 minutes long to complete. There is no follow-up to this study.
Health care professionals can learn more and complete the survey by clicking the blue link below:
Complete Survey
An Exploration of How Health Care Professionals Assess and Support Sleep and Fatigue in a Pediatric IBD Population: Patient Survey
Pediatric IBD Patient Survey
Pediatric patients with IBD can have challenges with fatigue (feeling tired a lot of the time) and difficulties with sleep. While fatigue and sleep are known to be important factors in supporting optimal psychosocial and medical outcomes in pediatric IBD, it is unknown how these topics are talked about in IBD care with patients.
This study hopes to understand 1) the current ways that health care professionals (HCPs) are talking about and helping with fatigue and sleep in pediatric IBD, and 2) the self-reported experience of fatigue and sleep in pediatric patients with IBD.
Patients who have been diagnosed with IBD and are between 8 to 17 years old can participate. Participants can complete a one-time secure, online survey that is estimated to take 10-20 minutes to finish. There is no follow-up to this study.
Patients can learn more and complete the survey by clicking the blue link below:
Complete Survey
Assessing Attitudes, Access, Barriers, and Facilitators to Multidisciplinary Care in Pediatric Inflammatory Bowel Disease
The below Research Opportunity is open to Healthcare Professionals at ImproveCareNow Care Centers in the United States, and is a Research Committee Approved study.
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We would like to invite you to participate in a research study that involves completing a brief online survey. This invitation is being sent to all pediatric GI medical providers at ICN centers in the United States. We would like to the explore the availability and facilitation of multidisciplinary pediatric IBD care across the United States. Understanding disparities in access could help to identify areas for improvement and improve care moving forward.
You can fill out the survey by clicking on the link below. On the first page of the survey, you will find an information sheet with more information on the study. By continuing to fill out the survey, you will give consent to participate in our research study.
https://redcap.nchri.org/surveys/?s=CTFACLH3YAJKNNTP
Thank you for participating in our study!
Nicole Davidson, MD
Hilary Michel, MD
Jennifer Dotson, MD
Jennie David, PhD
SHINE-2 Study
What is the SHINE-2 study?
Ulcerative colitis (often referred to as “UC”) is a chronic condition that may recur at various times over a lifetime and requires long-term medical care. UC causes inflammation in the lining of the colon (also called the “large intestine”). The main symptoms of UC are pain and recurring diarrhea (loose, watery stools with more movement of the bowel), which may contain blood and/or mucus.
Children with UC may experience emotional, physical, and social difficulties because of this condition. The effects can be experienced by the whole family. There is a need to provide more effective medical therapy for children with UC.
The SHINE-2 clinical research study (also called a “clinical trial”) is looking to see if an investigational medication works in children who are 2–17 years of age and diagnosed with UC. This study will also look at how safe the investigational medication (referred to as the “study drug”) is and how it acts in the body.
If your child takes part, they will be in the SHINE-2 study for about 1.5 years.