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Scientists track rare cancer syndrome in families to unlock genetic secrets

NCT ID NCT01247597

First seen Nov 01, 2025 · Last updated Apr 30, 2026 · Updated 18 times

Summary

This study follows people with a rare inherited condition called DICER1 syndrome, which raises the risk of certain lung, kidney, and other tumors. Researchers collect medical history, genetic samples, and imaging from affected individuals and their close relatives to learn how the condition develops and how to manage it. No treatment is given; the goal is to gather knowledge to improve future care and screening.

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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: •••••@•••••

  • Contact

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

Locations

  • National Cancer Institute - Shady Grove

    RECRUITING

    Rockville, Maryland, 20850, United States

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

  • National Institutes of Health Clinical Center

    RECRUITING

    Bethesda, Maryland, 20892, United States

    Contact Phone: •••-•••-••••

Conditions

Explore the condition pages connected to this study.