New registry aims to unlock secrets of Ultra-Rare childhood cancers

NCT ID NCT07489378

First seen Apr 04, 2026 · Last updated May 15, 2026 · Updated 7 times

Summary

This study is creating a registry of children, teens, and young adults (ages 1 month to 39 years) who have been diagnosed with a very rare solid tumor within the past year. Researchers will collect medical records, leftover tumor samples for genetic testing, and annual questionnaires for 5 years. No clinic visits are needed; participation is by phone or mail. The goal is to gather enough data to help develop future treatments for these extremely rare cancers.

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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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Contacts and locations

Study contacts

  • Contact

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

Locations

  • National Institutes of Health Clinical Center

    RECRUITING

    Bethesda, Maryland, 20892, United States

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

Conditions

Explore the condition pages connected to this study.