A Gabriella Miller Kids First Pediatric Research Program Conversation with Ellyn Miller

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Ellyn Miller (left) speaks with NIH Public Health Analyst Vanessa Barnes at the 2024 Children’s Brain Tumor Network Summit.

Credit: Photo courtesy of the Kids First Data Resource Center
Gabriella Miller was only 10 years old when she passed away from a rare pediatric brain cancer. During her life, Gabriella and her mother, Ellyn, were staunch advocates for cancer research. Through their efforts, Congress passed the Gabriella Miller Kids First Research Act, which created the Gabriella Miller Kids First Pediatric Research Program. The goal of the program was to help researchers uncover new insights into the biology of childhood cancer and congenital anomalies, including the discovery of shared genetic pathways between these disorders. Through the 10 years of the program, hundreds of researchers worldwide have used the open access Kids First Data Resource Portal to make connections to specific genes associated with pediatric cancer and congenital anomalies. In some cases, researchers have been able to target specific genes to improve patient outcomes, leading to cancer remission.

The Kids First team sat down with Ellyn Miller at the 2024 Children’s Brain Tumor Network Summit to discuss the legacy of the Kids First program a decade after its start. Mrs. Miller reflected on how the pediatric cancer field has changed since the beginning of the Kids First program and, importantly, how the program has fostered collaboration. The interview with Mrs. Miller is available on YouTube.

“It’s an incredible legacy my daughter has and the impact [the program] is having globally…ten years ago we wouldn’t have thought this was possible,” said Miller. “When we first were thrown into the childhood cancer world, it was very siloed. Institutions were not collaborative...these silos are being broken down, and because of that, the research has just skyrocketed.”

The program has enabled researchers to share information across conditions, propelling discoveries and moving ideas forward, faster.

Before Gabriella Miller passed away, she said, “stop talking and start doing.” Since this call to action, dozens of investigators have dived deep into pediatric cancer and congenital anomaly research, making all their datasets and findings public through the Kids First Data Resource. The Kids First Data Resource Portal hosts 36 large-scale cancer and congenital anomaly studies, powered by data from more than 38,000 participants, enabling robust and meaningful scientific discoveries.

Work from the Gabriella Miller Kids First Pediatric Research Program continues to uncover new insights into how childhood cancers and birth defects may be linked and helps thousands of other researchers continue the search for treatments.