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A Sample and Records Study for Sonic Hedgehog Medulloblastoma With a U1 Change

Original title: Relapsed and Progressive Sonic Hedgehog Medulloblastoma With U1 Mutation Registry Study

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 given, and this study collects samples and records rather than testing a treatment.

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 collects samples and health records to learn more about a brain tumor called Sonic Hedgehog medulloblastoma.

Who this trial is for. This study is for people whose Sonic Hedgehog medulloblastoma has come back or keeps growing, and who may have a U1 gene change in themselves or their tumor. It is run at Baylor College of Medicine and Texas Children's Cancer Center. It is not testing a drug. It collects biological samples and health information into a biobank, and a parent cheek swab is optional.

Where it stands. This study has not reported results. The team plans to look at medical records, treatment history, family history, and imaging, along with the samples. They want to learn what the U1 change does and whether gene changes passed down from parents raise the risk of this tumor. Taking part lasts about 5 years, and those answers are not in yet.

What this means, and what it doesn't

What it could mean: This is a way to help researchers learn about this tumor. The study says a person who takes part gets no direct benefit. The hope is that it helps other patients later. Someone who fits this picture could ask their care team about it.

What it doesn't mean: This does not mean there is a new treatment here. A study is a test, not proven care. Joining does not guarantee any benefit to you, and this study says it gives none directly. It is not a promise of a cure. Taking part is a choice, and a person can stop at any time.

Source: ClinicalTrials.gov, September 1, 2026 · Read the original

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