Rare CNS Tumors Outcomes &Risk

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 tumors occur in less than 2,000 people per year. Researchers want to study a large group of people with this kind of tumor. They want to learn more about the tumors, including the risk factors related to how they develop in adults. Objective: To collect health and gene data to learn about what changes are associated with a rare CNS Tumors, to eventually screen for these changes or target the genes in treatment. Eligibility: Adult participants \>= 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.

Sex

All

Minimum age

18 Years

* 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

• BACKGROUNDArmstrong TS, Vera-Bolanos E, Gilbert MR. Clinical course of adult patients with ependymoma: results of the Adult Ependymoma Outcomes Project. Cancer. 2011 Nov 15;117(22):5133-41. doi: 10.1002/cncr.26181. Epub 2011 Apr 28. PMID 21538344
• BACKGROUNDWalbert T, Mendoza TR, Vera-Bolanos E, Acquaye A, Gilbert MR, Armstrong TS. Symptoms and socio-economic impact of ependymoma on adult patients: results of the Adult Ependymoma Outcomes Project 2. J Neurooncol. 2015 Jan;121(2):341-8. doi: 10.1007/s11060-014-1638-4. Epub 2014 Oct 31. PMID 25359395
• BACKGROUNDAcquaye AA, Vera E, Gilbert MR, Armstrong TS. Clinical presentation and outcomes for adult ependymoma patients. Cancer. 2017 Feb 1;123(3):494-501. doi: 10.1002/cncr.30355. Epub 2016 Sep 28. PMID 27679985
• DERIVEDMcIver BA, Davis TS, Reinhart K, Vera E, Acquaye-Mallory A, Choi A, Kunst T, Johnson M, Grajkowska E, Miller H, Reyes J, Gilbert MR, Armstrong TS, Wright ML. Evaluating Clinical and Sociodemographic Risk for Symptom Burden Associated Interference With Daily Functioning in the Primary Brain Tumor Patient Population. Cancer Med. 2025 Mar;14(5):e70682. doi: 10.1002/cam4.70682. PMID 40052556
• DERIVEDAcquaye-Mallory A, Vera E, Choi A, Wall K, Gilbert MR, Armstrong TS. Identifying associations between sample characteristics, symptoms, and self-efficacy differences in adult patients with rare tumors of the central nervous system who participated in a novel web-based natural history study. Cancer Med. 2024 Aug;13(15):e70017. doi: 10.1002/cam4.70017. PMID 39101481