← Back to all trials
Completed
NCT03251989
Rare CNS Tumors Outcomes &Risk
Conditions: High Grade Meningioma, Ependymoma, Medulloblastoma, PNET, Primary CNS Sarcoma
Sex: All
Ages: 18 Years – N/A
Healthy volunteers: No
Enrollment: 326
Sponsor: National Cancer Institute (NCI)
Location: National Cancer Institute (NCI)/ Neuro-Oncology Branch Bethesda Maryland
Summary
Background:
Primary tumors of the brain and spine are those that start in the brain or spine. These tumors are rare, accounting for \= 18 years of age who self- identify as being diagnosed with one of 12 rare CNS tumors, including: 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).
Design:
Participants will be invited to participate through an ad on the CERN Foundation website (ependymoma), information on the Neuro-Oncology Branch website and other identified advocacy and social media sites and direct mailer to those who have already participated in the EO projects. (Registered Trademark)
* Interested participants will complete an enrollment form that will be sent to the study coordinator.
* The coordinator will then send the participant a consent form and schedule a time for phone consent.
* Participants will complete the Rare CNS tumors Outcomes Survey and once completed, the Rare CNS tumors Risk survey. (Registered Trademark)
* The questions on the Outcomes Survey will include treatment history, symptoms social and clinical information and it should take about 25-35 minutes. The Risk survey will cover their demographic information, personal medical history, family medical history and environmental exposures. This should take about 52 minutes.
* Participants who have physical problems can have help with the surveys and forms.
* Once the surveys are completed, participants will be mailed a kit to collect saliva for germline DNA. Participants will ship the sample to the study team in a prepaid envelope
* If the sample is not sufficient, participants will be contacted to give provide an additional sample....
Eligibility Criteria
* 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
Source: ClinicalTrials.gov (NCT03251989). StuddyBuddy aggregates publicly available trial information.