The first researchers funded through the Gabriella Miller Kids First Pediatric Research Program (Kids First) were already doing meaningful work. They may not have known how many other researchers would one day build on it. Through National Institutes of Health (NIH) X01 awards, which support investigators in generating and sharing datasets from children with cancer and congenital conditions, they created a foundation other scientists could return to with new questions for years to come.
Through the Kids First Data Resource Center (Kids First DRC), researchers can find, access, combine, and analyze this data for studies the original investigators may never have anticipated. A decade later, a new NIH analysis shows how far those contributions have reached.
Shared data expands discovery
Publications offer one measure of whether scientific data continue generating value. They capture discoveries from original investigators while also showing when other researchers reuse existing data, apply it to new questions, and build on earlier findings.
To better understand that reach, Ryan Richardson, PhD, Kaitlyn Browning, PhD, and Becca Black, PhD led a collaborative effort with analysts in the NIH Office of Strategic Coordination (OSC) to develop a program publication search tool.
Vanessa Barnes, MS
Public Health Analyst, NIH
This tool systematically identified and classified publications associated with the Kids First program and Kids First DRC. Vanessa Barnes, MS, a public health analyst in OSC, developed an approach to examine what those publications studied and how they related to clinically relevant questions.
The analysis identified three levels of connection: 243 awardee publications from researchers funded through Kids First; 217 user publications from researchers applying Kids First DRC data or resources to their own work; and 4,473 broader-influence publications that cited Kids First-supported research, referenced the program, or built on its scientific foundation.
In the program’s early years, most publications were authored by the investigators who generated the original Kids First datasets. Then, something surprising happened.
“After 2021, we see a real inflection point, when publications from researchers using Kids First resources begin to surpass those from the original awardees,” Barnes said. “The data generated through those early studies increasingly became a starting point for research led by others.”
That’s the promise of shared data in action. One team’s contribution continues generating value as new researchers bring new expertise, methods, and questions to it.
From genomic insight to clinical relevance
Barnes’ analysis also asked a more consequential question: What are these publications helping researchers understand?
She examined eight areas of clinical utility, defined as the ways scientific research can be used in clinical care to help diagnose disease, predict what may happen over time, and guide treatment and care.
Across awardee, user, and broader-influence publications, more than half connected to two or more areas of clinical utility: 63% of awardee publications, 58% of user publications, and 53% of the much larger broader-influence group.
“What stands out is that all three publication groups show a majority representation across multiple areas of clinical utility. As the research expands, we also begin to see greater representation in diagnostics, treatment decisions, therapeutics and other questions that move closer to the patient,” Barnes said.
The most common category was variant interpretation, which involves determining what a genetic change means and how it may contribute to disease. That knowledge can provide the foundation for later questions about diagnosis, prognosis, and treatment.
Individual publications show how that foundation can lead to broader applications. One Kids First DRC-supported study created a reference map of more than 400,000 structural variants, representing large changes in DNA. Researchers have cited the paper more than 1,000 times, demonstrating how a single study can serve as a resource for a much wider scientific community.
In another study, researchers who used Kids First DRC-related resources analyzed more than 2,000 cancers and uncovered previously hidden tumor subtypes and cancer-related cellular processes. Findings like these can help researchers distinguish cancers more precisely and identify biological pathways that may matter for prognosis or future treatment research.
Kids First DRC-supported research has also contributed to pediatric thyroid cancer clinical guidelines and AlphaMissense, an AI tool that helps predict whether genetic changes may be harmful. Together, these examples show shared data moving from foundational discovery into research, tools, and evidence increasingly connected to patient care.
Building on a decade of value
The analysis measures progress while also pointing toward what could come next.
Pairing genomic data with richer clinical information, including treatment histories and patient outcomes, could help researchers connect biological differences with what happens during a patient’s care. That could open more opportunities to study prognosis, treatment decisions, therapeutics, and clinical trials.
The X01 investigators began this trajectory by generating and sharing datasets others could build upon. The Kids First DRC helps keep those contributions accessible and usable for the researchers who come next.
A decade later, the publication record makes that continuing value visible. When one study ends, shared data can keep fueling new questions and discoveries that move research closer to answers for children and families.
Learn what you can build on next in the Kids First DRC portal.
Bluesky