Rare brain tumors in children, adolescents, and young adults account for approximately 3-5% of all pediatric brain tumors. Due to the low incidence of some of these entities, there is a lack of standardized treatment approaches and thus poor outcomes. The recent incorporation of molecular information for diagnostic purposes has transformed the management of brain tumors. Nevertheless, some new molecularly defined entities are extremely rare and clinically poorly characterized.

We are planning to collect information on diagnosis, treatment, follow-up and additional information about your samples of tissues submitted at our hospital for better diagnosis purposes. The additional tests are optional. Further, we will also be sharing the images of the scans which will be done as part of diagnosis and treatment. This study is running in other countries with the same purpose. This will help us create a registry for future reference.

We aim to develop a bank where all such samples can be preserved as a repository biobank (A biobank is a collection of biological samples, like blood or tissue, that is carefully labeled with detailed information) for current and future research in children, adolescents, and young adults with rare brain tumors. However, the preservation and donation of specimens for research purposes is optional and one can still can continue participation in this study.

This is a retrospective and prospective observational study that seeks to collect matched tumor samples, clinical and radiological data to better understand the outcomes of patients with rare brain tumors. We are looking forward to take data on 30 patients retrospectively and 70 patients prospectively. The data will be shared with Children’s National Hospital, Washington DC, USA after obtaining necessary approvals It is the nodal centre maintaining the registry.