kidsfirst

is a Data Source.

The Gabriella Miller Kids First Pediatric Research Program Data Resource Center (Kids First DRC) provides researchers access to genomic and clinical data from pediatric cancer and structural birth defect cohorts to accelerate discovery and development of more effective treatments.

Domains

health, biomedical, genomics, clinical

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Homepage

kidsfirst

Repository

GitHub

Infores ID

Unknown

FAIRsharing ID

Unknown

Product Summary

Products

From this Resource
ID Name URL Category Format Description
kidsfirst.portal Kids First Data Resource Portal portal.kidsfirstdrc.org GraphicalInterface Centralized platform providing access...
kidsfirst.cavatica CAVATICA Platform cavatica.sbgenomics.com GraphicalInterface Cloud-based analysis platform for Kid...
kidsfirst.pedcbioportal PedcBioPortal pedcbioportal.kidsfirstdrc.org GraphicalInterface Web-based tool for exploring and visu...
From other Resources
ID Name URL Category Format Description
ubkg.neo4j UBKG Neo4j Docker Distribution ubkg-downloads.xconsortia.org GraphProduct Turnkey neo4j distributions that depl...
ubkg.csv UBKG Ontology CSV Files ubkg-downloads.xconsortia.org GraphProduct csv Ontology CSV files that can be import...

Details

Kids First Data Resource Center

The Gabriella Miller Kids First Pediatric Research Program Data Resource Center (Kids First DRC) is a collaborative pediatric research effort with the goal to understand the genetic causes and links between childhood cancer and structural birth defects. The Kids First DRC accelerates data-driven discoveries by providing researchers with access to one of the largest pediatric data collections available.

Background

The Kids First DRC is funded by the NIH Common Fund as part of the Gabriella Miller Kids First Pediatric Research Program, named after 10-year-old Gabriella Miller who advocated for increased pediatric research funding before her death from cancer in 2013. The Gabriella Miller Kids First Research Act was signed into law in 2014, authorizing $12.6 million each year for 10 years to support pediatric research.

Data Resources

Kids First DRC provides researchers with:

  • Harmonized genomic and clinical data from multiple childhood cancer and structural birth defect cohorts
  • Access to data from over 36,000 patient and family participants across 36 studies
  • A variety of data modalities including:
    • Whole Genome Sequencing
    • RNA Sequencing
    • Whole Exome Sequencing
    • Linked-Read Whole Genome Sequencing
    • Long Reads Sequencing

All clinical data is standardized using ontologies such as the Human Phenotype Ontology (HPO) for phenotypes and MONDO Disease Ontology for diagnoses, enabling cross-condition analyses and discovery.

Data Access

Access to Kids First data requires approved access through the NIH Database of Genotypes and Phenotypes (dbGaP). The data is not publicly downloadable but is accessible to qualified researchers who have obtained appropriate approvals. The Kids First Data Resource Portal allows researchers to explore and analyze data within a secure environment.

Partner Institutions

The Kids First DRC comprises a collaborative network of leading institutions:

  • Children’s Hospital of Philadelphia
  • University of North Carolina Health
  • Velsera
  • CHU Sainte-Justine University Hospital Centre
  • The University of Chicago Center for Data Intensive Science
  • Vanderbilt University Medical Center

Sequencing partners include Hudson Alpha, Broad Institute, Baylor College of Medicine Human Genome Sequencing Center, and Washington University in St. Louis.

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Created: June 04, 2025 | Last modified: December 13, 2025