Major study launches to measure what matters most for kids with intestinal failure
NCT ID NCT04629014
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study tracks the quality of life of 750 children with intestinal failure across North America. Researchers will use surveys to measure physical, emotional, and social well-being, and look at how medical and family factors affect these scores. The goal is to identify what helps these children thrive, not just survive.
What this could mean
Our plain-language read of the trial. This is informational only, not medical advice or a prediction.
- What this could lead to
- If successful, this study could help doctors and families understand what improves quality of life for children with intestinal failure, leading to better support and care strategies.
- What could go wrong
- This is an observational study, not a treatment trial, so it won't directly change medical care. Results may vary across centers and may not apply to all patients.
This is an AI summary of the original study and may miss details. Read our disclaimer.
Study facts
What this study's own registry entry says, in plain language.
- Participants
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About 750 people
The number the study aims to enrol. It can still change while the study runs.
- Started
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Feb 2020
- Expected to finish
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Dec 2029
An estimate. End dates often move.
- Lead sponsor
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Other sponsor
The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.
Who can take part
This study's own entry requirements. Only the study team can say for certain whether you qualify.
Who is studied
Participants will be children with a specific diagnosis of intestinal failure as determined by parenteral nutrition dependence at any point in their history for more than 60 out of 74 consecutive days who are managed at one of the intestinal rehabilitation programs located at the study participating sites.
- Ages
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6 months to 25 years
- Sex
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Anyone
- Healthy volunteers
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Not accepted
This study is not open to healthy volunteers. The entry requirements below say who it is open to.
Show the full entry requirements Hide the full entry requirements
Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.
Inclusion Criteria: * Participants will be followed in a participating institution's intestinal rehabilitation program * Participants will have a diagnosis of intestinal failure due to functional or structural intestinal dysfunction with current or prior history of specialized nutritional support (parenteral nutrition requirement for 60 out of 74 consecutive days) * Participants will be age 6 months to 25 years old. * Parents/caregivers must be able to complete questionnaire without assistance. * English or Spanish speaking Exclusion Criteria: * Participants aged less than 6 months or greater than 25 years will not be included in this study * Participants will not be enrolled less than 3 months from index admission or initial outpatient evaluation * Participants will not be enrolled less than 1 month from inpatient admission (any admission greater than 24 hours in duration) * Participants will not be enrolled less than 1 month from any operative intervention requiring general anesthesia. * Primary language other than English or Spanish. * Participants who have a currently functional small bowel, liver/small bowel or multivisceral transplant * While other major co-morbidities may be excluded at a later time during data analysis, or may be analyzed as a specific sub-group, they will not be excluded outright. For example, participants with global developmental delay may have parent surveys only, and therefore would need to be excluded from paired analysis of proxy vs. participant perception of HRQOL
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
How to take part
Only the study team decides who joins. These are the ways to reach them.
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The places running it
14 sites in 2 countries. The list below names each one and where it is.
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The official record
ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.
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A doctor treating you
A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.
Contacts and locations
Locations
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Alberta Children's Hospital
RECRUITINGCalgary, Alberta, T3B 6A8, Canada
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BC Children's Hospital
RECRUITINGVancouver, British Columbia, V6H 3N1, Canada
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Boston Children's Hospital
RECRUITINGBoston, Massachusetts, 02115, United States
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C.S. Mott Children's Hospital
RECRUITINGAnn Arbor, Michigan, 48109, United States
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Children's Hospital Colorado
RECRUITINGAurora, Colorado, 80045, United States
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Children's of Alabama
NOT_YET_RECRUITINGBirmingham, Alabama, 35233, United States
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Connecticut Children's Medical Center
RECRUITINGHartford, Connecticut, 06106, United States
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Dallas Children's Hospital
RECRUITINGDallas, Texas, 75390, United States
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Duke Children's Hospital
RECRUITINGDurham, North Carolina, 27710, United States
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Hospital for Sick Children
RECRUITINGToronto, Ontario, M5G 1X8, Canada
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Lurie Children's Hospital
RECRUITINGChicago, Illinois, 60611, United States
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Seattle Children's Hospital
RECRUITINGSeattle, Washington, 98105, United States
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St. Louis Children's Hospital
RECRUITINGSt Louis, Missouri, 63100, United States
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UT Health Houston
RECRUITINGHouston, Texas, 77030, United States
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