Abstract

A larger scale prospective registration study for pediatric solid tumor has been conducted nationwide in Japan since 2011 in Japan Children’s Cancer Group (JCCG). In the study, the clinical data and surgical specimen are collected into the National Center for Child Health. Kyoto University Hospital has participated in the study since IRB approval in 2011. We reviewed our patients registered to the study and assessed the role of clinical research professional in the registration study. Fifty-one patients with pediatric brain tumors participated in this study from 2011 to 2020. There were 17 intracranial germ cell tumors, 9 medulloblastomas, 14 gliomas and ependymomas in 5 diffuse midline gliomas, 9 pilocytic astrocytoma, and 2 other types of tumor. Forty surgical specimens were collected for central review. The status of clinical data entry was complete in 33 patients. The registrations and sending of clinical data and specimens have remarkably increased without exceptions since a clinical research professional supported the study in 2018. The study collecting and analyzing pathological diagnosis, molecular diagnosis, treatment, and clinical information in patients with pediatric brain tumor are important to realize the current status. The clinical research professional plays an important role to register patients and to send the specimens and clinical data into the study.

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