PNOC COMP: A Protocol for Children and Young Adults Diagnosed with a Central Nervous System (CNS) Tumor to Assess Cognitive, Quality of Life (QOL), and Comprehensive Effects of Therapies
PNOC COMP
What is the goal of the study?
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.
Who can participate in the study?
Please contact the study team listed below to learn more.