Upcoming Opportunities:

Examination of the perceived impact, utility, and effectiveness of a shared decision-making tool for surgery in pediatric Inflammatory Bowel Disease

Friday, September 30, 2022 at 12:00 PM through September 29, 2024

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!

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

Saturday, October 01, 2022 at 12:00 PM through February 02, 2023

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

Saturday, October 01, 2022 at 12:00 PM through January 31, 2023

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 Experiences of Teens Living with IBD Study

Saturday, October 01, 2022 at 06:00 PM through March 30, 2023

This study will explore the experiences of teens aged 13-17 living with ulcerative colitis and Crohn’s disease in the US. For this study, teens will be asked to complete two (2) online surveys – one immediately after joining the study and a second survey 6 months later. Survey questions will focus on social life, family, school, symptoms, and the challenges of living with IBD. 

In addition, they may be invited to use a mobile app, the SMART-IBD app, to log their IBD medications and symptoms for one (1) week after joining the study. Choosing to use this mobile app is an optional part of the study; teens can decline this part of the study and can still participate in this study.

Learn more about this study

Contact Caeli Malloy if interested in participating! 



The Contraception in Colitis and Crohn's Disease (CCC) Study

Sunday, January 01, 2023 at 06:00 PM through December 31, 2024

Young Women with IBD: Share your experiences with birth control and reproductive health. 

We are studying how having IBD impacts young women’s birth control choices and preferences.

You may be able to participate if you:

  • Have Inflammatory Bowel Disease
  • Are between the ages of 18 to 30
  • Are a woman
  • Use or previously used contraception or are thinking about starting to use
    contraception

You will complete a 5-minute survey about your medical and
reproductive health history. You will participate in a 60-minute one-on-one
confidential interview with a clinical researcher (remote or in-person).

You will receive a $35 gift card for your participation.

See the flyer below for more information or to download as a PDF to share.  



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