Abstract

A larger scale prospective registration study has been conducted nationwide in Japan since 2011, called as “registration study in pediatric solid tumor”, in Japan Children’s Cancer Group (JCCG). In this study, clinical data and surgical specimen are collected into the National Center for Child Health. Kyoto University Hospital has participated in this study since IRB approval in 2011. We reviewed our registered patients to the registration study and assessed the current status. 40 patients with pediatric brain tumors participated in this study from 2011 to 2020. There were 13 intracranial germ cell tumors, 9 medulloblastomas, 6 gliomas in 4 diffuse midline gliomas, 4 pilocytic astrocytoma, and 4 other types of tumor. The informed consent was obtained from 36 patients by pediatricians and 3 patients by neurosurgeons. Twenty-five surgical specimens were collected for central review. The reasons of no surgical specimens were nonsurgical management in 6 patients and no enough FFPE sample in 3 patients. There was no discrepancy between central review and institutional diagnosis. The status of clinical data entry was complete in 13 patients and uncomplete in 9 patients. These registration data including pathological diagnosis, molecular diagnosis, treatment, clinical information in patients with pediatric brain tumor are very important to realize current status. To conduct this study certainly, the collaboration among pediatrician, neurosurgeon, and supporting staff should be needed in collecting specimens and clinical data.

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