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.

Disclaimer Read more

This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Conditions

The condition(s) this trial relates to.

Hyperphagia Intestinal Failure short bowel syndrome

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • Alberta Children's Hospital

    RECRUITING

    Calgary, Alberta, T3B 6A8, Canada

    Contact Email: •••••@•••••

    Contact

  • BC Children's Hospital

    RECRUITING

    Vancouver, British Columbia, V6H 3N1, Canada

    Contact Email: •••••@•••••

    Contact

  • Boston Children's Hospital

    RECRUITING

    Boston, Massachusetts, 02115, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

  • C.S. Mott Children's Hospital

    RECRUITING

    Ann Arbor, Michigan, 48109, United States

    Contact Email: •••••@•••••

    Contact

  • Children's Hospital Colorado

    RECRUITING

    Aurora, Colorado, 80045, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

  • Children's of Alabama

    NOT_YET_RECRUITING

    Birmingham, Alabama, 35233, United States

    Contact Email: •••••@•••••

    Contact

  • Connecticut Children's Medical Center

    RECRUITING

    Hartford, Connecticut, 06106, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

  • Dallas Children's Hospital

    RECRUITING

    Dallas, Texas, 75390, United States

    Contact Email: •••••@•••••

    Contact

  • Duke Children's Hospital

    RECRUITING

    Durham, North Carolina, 27710, United States

    Contact Email: •••••@•••••

    Contact

  • Hospital for Sick Children

    RECRUITING

    Toronto, Ontario, M5G 1X8, Canada

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

  • Lurie Children's Hospital

    RECRUITING

    Chicago, Illinois, 60611, United States

    Contact Email: •••••@•••••

    Contact

  • Seattle Children's Hospital

    RECRUITING

    Seattle, Washington, 98105, United States

    Contact Email: •••••@•••••

    Contact

  • St. Louis Children's Hospital

    RECRUITING

    St Louis, Missouri, 63100, United States

    Contact Email: •••••@•••••

    Contact

  • UT Health Houston

    RECRUITING

    Houston, Texas, 77030, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact