New national registry aims to unlock secrets of Ultra-Rare childhood cancers
NCT ID NCT07489378
First seen Jun 25, 2026 · Last updated Jul 01, 2026 · Updated 4 times
Summary
This study creates a registry for children, teens, and young adults (ages 1 month to 39 years) diagnosed with very rare solid tumors (fewer than 2 cases per million people per year). Researchers will collect medical records, tumor samples, and patient questionnaires to better understand these cancers. No clinic visits are needed; participation is by phone or mail. The goal is to gather data that could lead to future treatments.
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 registry will provide crucial data to help researchers understand very rare cancers and develop future treatments.
What could go wrong
This is an observational study, not a treatment trial. It may not directly benefit participants, and data collection could be incomplete or slow.
Disclaimer
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This is a summary of
the original study
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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.
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.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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National Institutes of Health Clinical Center
RECRUITINGBethesda, Maryland, 20892, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••