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Large study digs into rare brain tumors to uncover clues

NCT ID NCT03251989

Knowledge-focused Sponsor: National Cancer Institute (NCI) Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
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 This study
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 26, 2026 · Last updated Sep 17, 2026 · Updated 22 times

Summary

This study gathered information from 326 adults with rare central nervous system tumors, such as medulloblastoma and ependymoma. Participants completed surveys about their symptoms, treatments, and lifestyle, and provided a saliva sample for genetic analysis. The goal was to learn more about what causes these rare tumors and how they affect people, which could guide future research.

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

326 people

The number who actually took part.

Started

Aug 2017

Finished

May 2025

Lead sponsor

A government research agency

The lead sponsor is the US National Institutes of Health.

Who can take part

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

Who is studied

Participants will be solicited through the Collaborative Ependymoma Research Network (CERN), information on the Neuro-Oncology Branch website and other advocacy organization websites, mailing list and social media sites.@@@

Ages

18 years and older

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: Participants with rare CNS tumors who meet the following criteria will be invited to participate in the study: * A diagnosis of rare CNS tumors, (Atypical teratoid rhabdoid tumor (ATRT); Brainstem and midline gliomas; Choroid plexus tumors; Ependymoma; High grade meningioma; Gliomatosis cerebri; Medulloblastoma; Oligodendroglioma / Anaplastic oligodendroglioma; Pineal region tumors; Pleomorphic xanthroastrocytoma / Anaplastic pleomorphic xanthroastrocytoma; PNET (Supratentorial embryonal tumor); Primary CNS sarcoma / Secondary CNS sarcoma (Gliosarcoma) or as reported by the participant: * Participants who are currently \>= 18 years of age with the initial rare CNS tumor diagnosis occurring at any point in their lifetime are eligible. * Ability to speak, write, and read English, as questionnaires available in English language only. * Ability of participant to understand and the willingness to sign a written informed consent document. EXCLUSION CRITERIA: See inclusion criteria

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Conditions

The condition(s) this trial relates to.

brain cancer central nervous system cancer Choroid Plexus Neoplasms ependymoma glioma grade III meningioma medulloblastoma Neuroectodermal Tumors, Primitive primitive neuroectodermal tumor rhabdoid tumor

As listed by the trial registrant

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

Ependymoma High grade meningioma Medulloblastoma PNET Primary CNS sarcoma

Contacts and locations

Locations

  • National Cancer Institute (NCI)/ Neuro-Oncology Branch

    Bethesda, Maryland, 20892, United States

More trials for these conditions

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