News Release

Kids First releases landmark dataset on rare childhood germ cell tumors

The Gabriella Miller Kids First Data Resource Center adds vital genomic data on rare childhood germ cell tumors in its newly released 37th study

Business Announcement

Gabriella Miller Kids First Data Resource Center

The Gabriella Miller Kids First Data Resource Center (Kids First DRC) has released its 37th pediatric research study, available in the Kids First Data Resource Portal. This latest study focuses on extracranial germ cell tumors, a rare group of childhood cancers that can develop outside of or within the brain.

WHO: Kids First, a program from the National Institutes of Health (NIH)

WHAT: Announcing the latest data release to the Kids First data ecosystem, the Kids First: Extracranial Germ Cell Tumors study (KF-ECGT). This new dataset comprises information from 393 children and young adults, along with a total of 493 biological samples submitted by principal investigator Jen Poynter, PhD from the University of Minnesota. Researchers now have access to:

  • Inherited (germline) genetic data from patients and, in many cases, their parents

  • Tumor-specific (somatic) genetic changes

  • RNA sequencing data that shows which genes are active in the tumors

This study complements an earlier Kids First dataset on intracranial germ cell tumors, providing researchers with a more comprehensive view of how these cancers develop both within and outside the brain.

Both studies can be accessed through dbGaP under accession number phs002322.

WHEN: The extracranial germ cell tumors study is available now.

WHERE: Access and explore these new data through the Kids First Data Resource Portal. Instructions for requesting access to controlled data are available in the Kids First Help Center.

WHY: Through access to rich genomic data from children with cancer and congenital conditions, Kids First gives researchers the tools to spot disease drivers, develop new therapies, and uncover early diagnostic signals. This shared resource fuels collaboration and speeds progress toward better outcomes for children.

About the Gabriella Miller Kids First Data Resource Center (Kids First DRC)
Kids First DRC, a component of the NIH Gabriella Miller Kids First Pediatric Research Program, is a centralized, open-access, cloud-based platform that enables pediatric researchers to study the genetic links between childhood cancers and congenital conditions. It supports a global community of scientists, clinicians, and patient families working together to accelerate cures for children. Learn more at kidsfirstdrc.org.

Press Contact
Whitney Rife
rifew@chop.edu


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