Rare cancer syndrome under the microscope: what families need to know
NCT ID NCT01247597
First seen Jun 27, 2026 · Last updated Jul 09, 2026 · Updated 5 times
Summary
This study follows people with a rare genetic condition called DICER1 syndrome, which raises the risk of certain childhood cancers like pleuropulmonary blastoma. Researchers will collect medical histories, genetic samples, and tissue from up to 1,500 participants and their relatives. The goal is to better understand the condition, improve cancer screening, and develop guidelines for prevention and care.
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 lead to better screening and management guidelines for families at risk of DICER1-related cancers.
- What could go wrong
- This is an observational study, not a treatment trial, so it won't directly help participants. It may take years to gather enough data to change clinical practice.
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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
Locations
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National Cancer Institute - Shady Grove
RECRUITINGRockville, Maryland, 20850, United States
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National Institutes of Health Clinical Center
RECRUITINGBethesda, Maryland, 20892, United States
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