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Scientists launch massive effort to crack the code of rare brain tumors

NCT ID NCT05697874

Knowledge-focused Sponsor: Children's National Research Institute Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Aug 07, 2026 · Updated 1 time

Summary

This study is creating a large international database of children, teens, and young adults with rare brain tumors. Researchers will collect tumor samples and medical information to better understand how these tumors behave and what makes them unique. The goal is to improve diagnosis and treatment for future patients.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 5,800 people

The number the study aims to enrol. It can still change while the study runs.

Started

Jan 2023

Expected to finish

Dec 2033

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

The study population will include patients who have completed the informed consent process and are \<= to 45 years of age at diagnosis of the following: CNS Sarcoma, BCOR-altered tumor, Astroblastoma/MNI-1 altered tumors, histologically ambiguous/unclassifiable brain tumor, rare brain tumor. Patients from anywhere in the world are eligible for enrollment.

Ages

Up to 45 years

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * Patients with a known or suspected CNS Sarcoma. * Patients with a known or suspected BCOR-altered brain tumor * Patients with a known or suspected Astroblastoma/NM-1 altered brain tumor * Patients with known or suspected histologically ambiguous/unclassifiable brain tumor * Patients with a known or suspected rare brain tumor. * Signed informed consent by patient/ parent or guardian (assent where applicable) to participate in the study. Exclusion Criteria: * The patient has an extra-CNS primary tumor. * The patient is older than 46 years of age at diagnosis. * The patient or family is not willing to participate or does not sign informed consent.

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Conditions

The condition(s) this trial relates to.

astroblastoma BCOR ITD sarcoma central nervous system sarcoma central nervous system tumor with bcor internal tandem duplication neoplasm neuroepithelial neoplasm Rare Diseases

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Astroblastoma Bcor itd sarcoma CNS sarcoma Unclassified tumor, malignant

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    13 sites in 4 countries. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Akron Children's Hospital

    RECRUITING

    Akron, Ohio, 44308, United States

  • Ann & Robert H. Lurie Children's Hospital of Chicago

    RECRUITING

    Chicago, Illinois, 60611, United States

  • Children's Hospital Los Angeles

    RECRUITING

    Los Angeles, California, 90027, United States

  • Children's National Hospital

    RECRUITING

    Washington D.C., District of Columbia, 20010, United States

  • Cincinnati Children's Hospital Medical Center

    RECRUITING

    Cincinnati, Ohio, 45229-3026, United States

  • Clinica Del Country

    RECRUITING

    Bogotá, 110221, Colombia

  • Dana-Dwek Children's Hospital- Tel Aviv Medical Center

    RECRUITING

    Tel Aviv, 6423906, Israel

  • HOMI - Fundación Hospital de la Misericordia

    RECRUITING

    Bogotá, Bogota D.C., 111511, Colombia

  • Rambam Health Care Campus

    RECRUITING

    Haifa, 3525409, Israel

  • Schneider Children's Medical Center- CLALIT Health Services

    RECRUITING

    Petah Tikva, 4920235, Israel

  • TUCCA - Santa Marcelina

    RECRUITING

    São Paulo, São Paulo, 08270-070, Brazil

  • The Sheba Medical Center

    RECRUITING

    Tel Litwinsky, 52621, Israel

  • University of California San Francisco

    RECRUITING

    San Francisco, California, 94158, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.