Study demonstrates a new standard for pediatric research

A new analysis from the Gabriella Miller Kids First Data Resource Center (Kids First DRC) shows how a collaborative, data-driven research model is creating broader opportunities to understand pediatric disease.

Published in The American Journal of Human Genetics, the paper reviews the development and impact of Kids First during its first decade. Its findings demonstrate how high-quality genomic and clinical data, developed through individual studies and brought together in a shared cloud-based resource, can continue to power new research across diseases, institutions and scientific disciplines.

“The significance we found is not only what researchers have discovered through Kids First DRC, but how the program has expanded what they are able to investigate,” said Adam Resnick, Ph.D., co-director of the Kids First DRC and a corresponding author of the paper. “It establishes a new standard in which every contribution can strengthen the foundation for the next question, collaboration and discovery.”

As of the end of 2025, Kids First DRC had released data from 36 studies representing more than 38,000 children. Researchers had used Kids First data in 244 peer-reviewed publications, and 40% of those papers did not include an investigator from the original study—evidence that the resource is extending the value of pediatric data to new teams and new research questions.

Studies using Kids First DRC data have uncovered genetic connections across childhood cancer and congenital conditions, strengthened disease-focused investigations and identified findings with the potential to improve diagnosis, risk assessment and treatment.

“As the article suggests, we’re now seeing Kids First DRC data support an increasingly wide range of research, from disease-specific and cross-condition studies to the development of new analytical methods,” said David Higgins, Ph.D., lead author of the paper and program manager for the Kids First DRC. “And the work is moving toward clinical application, contributing insights that can inform risk assessment, treatment strategies, clinical trials and other decisions affecting pediatric care.”

The publication, “The Gabriella Miller Kids First Data Resource for genomic research in pediatric cancer and congenital anomalies,” also looks ahead to the continued expansion of the resource, including new datasets, genomic technologies and opportunities to connect research more closely with clinical care.

Provided by
Gabriella Miller Kids First Data Resource Center

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Sadie Harley

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