Patients of all ages co-enroll on PNOC therapeutic protocols, and patients currently ≤ 39 years if not co-enrolled on another PNOC protocol. All patients enrolled must have a primary central nervous system tumor.

The rationale for this protocol is to provide a framework to collect comprehensive outcome data on children and young adults with primary central nervous system tumors to inform cognitive, QOL, and functional outcomes. As we introduce novel therapeutic strategies into the care of these patients such as targeted inhibitors (e.g., MEK or BRAF inhibitors) or immunotherapy strategies (checkpoint blockade, vaccine strategies, oncolytic virus or CAR T cell amongst others), it will be critical to understand the longitudinal impact of these strategies on the developing and aging brain. It is especially critical to assess the longitudinal impact in a comprehensive manner as we are introducing these new treatment strategies to developing children. Enrolling into this longitudinal follow up protocol will allow us to collect data in a comprehensive manner with the goal to assess the impact of these new therapies longitudinally. Further, it is critical to assess the cognitive, QOL, and functional outcomes within the context of the genetic make-up of the patient’s tumor as well as germline alterations. Therefore, we will collect any patient-related genomic information that has been obtained on a standard of care (SOC) basis. The genotypic and phenotypic correlation will be further enhanced through machine learning discoveries that will be applied as these become more readily available.

The overall intent of this protocol is to collect genotype and phenotype information and make it available to the research community at large. It is not limited to participants enrolled in PNOC trials so any child or adolescent/young adult (AYA) patient can enroll. Participants enrolling on a therapeutic PNOC trial are mandated to enroll in this longitudinal follow up study.

Primary Objectives:

• To longitudinally assess cognitive outcomes using a neurocognitive screening battery in children and young adults diagnosed with a CNS tumor.
• To longitudinally assess the impact of specific therapies on the QOL in children and young adults diagnosed with a CNS tumor.
• To longitudinally assess brain, spine, and vascular imaging to correlate these with treatment, cognitive, and QOL outcomes.

Exploratory Objectives:

• To assess how germline alterations impact tumor response, and cognitive outcomes in defined disease entities.
• To collect comprehensive genomic, epigenetic, transcriptomic, immune profiling, and phenotypic data on children and young adults diagnosed with a CNS tumor.
• To longitudinally assess endocrine, visual and auditory function in children and young adults diagnosed with a CNS tumor.
• To longitudinally assess measures of daily functional independence in children and young adults diagnosed with a CNS tumor.
• To assess patient and/or proxy satisfaction with study participating via patient-reported outcome (PRO) measures in the context of race ethnicity and other health related social risks.
• To assess on therapy toxicity in the context of race, ethnicity and other health related social risks.

Inclusion Criteria:

• Diagnosis: children and young adults with CNS tumor including brain and spinal cord tumors
• Patients with neurofibromatosis or other hereditary tumor predisposition syndromes are eligible for this trial if they have a CNS (brain or spinal cord) tumor
• Age: 0-39 years of age at the time of initial CNS tumor diagnosis
• Patients who are enrolled on a PNOC therapeutic trial will co-enroll in this study. These patients may be any age at the time of enrollment but must have been ≤ 39 at the time of diagnosis.
• Patients who are not enrolled in a PNOC therapeutic clinical trial are eligible but not required to participate in this study. These patients must be ≤ 39 at the time of enrollment.
• Patients without tissue available will still be eligible for the trial.

Exclusion Criteria: None

Funding is provided by the PNOC Foundation.