Research Opportunities

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

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

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

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