A registry that studies DICER1 gene changes and the tumors linked to them
Original title: International PPB/DICER1 Registry
How far along is this research?
This is a trial that is enrolling or has been updated. It is not a finding yet.
No phase is listed, and this study collects health records rather than testing a drug.
Status: Recruiting. It is looking for patients now. Talk to your care team about whether it fits you.
The trial team last updated this record on . Always check the trial page for the latest.
The short version
This study gathers health details from people with DICER1 gene changes and their families.
Who this trial is for. This registry is for people with PPB or other tumors tied to the DICER1 gene. Family members may take part too. It collects details about the care each person's own doctors chose.
Where it stands. The registry has not reported results. It is still collecting treatment and family health details over time. What those details will show is not known yet.
What this means, and what it doesn't
What it could mean: The tumors tied to this gene are rare, so shared records may help doctors learn more. Someone with a DICER1 gene change, or a tumor linked to it, could ask their care team about this registry.
What it doesn't mean: This does not mean a new treatment is ready. A study is a test, not proven care. Taking part is not a promise that you will be helped. It is not a cure.
Source: ClinicalTrials.gov, October 26, 2026 · Read the original
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