Status:

COMPLETED

Rare CNS Tumors Outcomes &Risk

Lead Sponsor:

National Cancer Institute (NCI)

Conditions:

High Grade Meningioma

Ependymoma

Eligibility:

All Genders

18+ years

Brief Summary

Background: Primary tumors of the brain and spine are those that start in the brain or spine. These tumors are rare, accounting for \<2% of all cancers diagnosed in the United States. Some of these t...

Detailed Description

Background: Rare cancers are defined as those with \<40,000 cases per year. There are over 130 separate types of primary CNS tumors, all of which meet the definition of a rare cancer. However, some C...

Eligibility Criteria

Inclusion

  • 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

Exclusion

    Key Trial Info

    Start Date :

    August 21 2017

    Trial Type :

    OBSERVATIONAL

    Allocation :

    ACTUAL

    End Date :

    May 6 2025

    Estimated Enrollment :

    326 Patients enrolled

    Trial Details

    Trial ID

    NCT03251989

    Start Date

    August 21 2017

    End Date

    May 6 2025

    Last Update

    January 8 2026

    Active Locations (1)

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    Page 1 of 1 (1 locations)

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    National Cancer Institute (NCI)/ Neuro-Oncology Branch

    Bethesda, Maryland, United States, 20892