Authors
David M Higgins, Christopher Blackden, Miguel Brown, Christina Diaz, Leslie Duffy, Christopher Friedman, Yiran Guo, Mateusz Koptyra, Qi Li, Alex Lubneuski, Dan Miller, Bobby Moulder, Wendy Payton, Emily Reed, Whitney Rife, Alex Sickler, Natasha Singh, Amanda Warkow, Eric Wenger, Jessica Wong, Bo Zhang, Chuwei Zhong, Yuankun Zhu, Gaelle Altefrohne, Denis Beauregard, Jeremy Costanza, Evans Girard, Luc-Frederic Langis, Lucas Lemonnier, Adrian Paul, Céline Pelletier, Karine St-Onge, Jean-Philippe Thibert, Michele Mattioni, Surya Saha, Jared Rozowsky, Milos Trboljevac, Marko Zecevic, Jeff Knight, Gina Kuffel, Radhika Reddy, Pauline Ribeyre, Bailey Farrow, Yelena Cox, Andrew Ericson, Jamed Ferreris Vargas, Sophie Forman, Sofia Labrecque, Eric Torstenson, Kai Yin Ho, Nicole A Vasilevsky, Emily Boja, Valerie Cotton, Danielle Daee, Marcia V Fournier, Jaime M Guidry Auvil, Andréa C Harris, Huiqing Li, Lu Wang, Brandi Davis-Dusenbery, Melissa A Haendel, Jena Lilly, Phillip B Storm, Sam Volchenboum, Robert L Grossman, Robert Carroll, Jack DiGiovanna, Deanne Taylor, Vincent Ferretti, Adam Resnick, Allison P Heath
Published in
American journal of human genetics. Aug 17, 2026. Epub Aug 17, 2026.
Abstract
Nine-year-old brain tumor patient Gabriella Miller challenged members of Congress to "stop talking and start doing" when providing federal funding for research into cures for pediatric cancer and congenital anomalies. Though she ultimately lost her life to that cancer, her advocacy efforts resulted in the 2014 Gabriella Miller Kids First Research Act, launching the Gabriella Miller Kids First Pediatric Research Program at the National Institutes of Health (NIH). The overarching goal of the Gabriella Miller Kids First Pediatric Research Program is to help researchers uncover new insights into the biology of childhood cancer and congenital anomalies. Following the signing of the Gabriella Miller Kids First Research Act 2.0 in January 2025, the program has been extended at NIH through 2028 to advance the groundwork laid in the program's first ten years. The Gabriella Miller Kids First Data Resource Center has since honored her legacy by building a comprehensive data resource for genomic research into pediatric conditions. Data from more than 30,000 participants annotated with demographic and clinical information related to their diagnoses have been released for secondary research and analysis using the center's web-based platforms. This paper analyzes the outcomes of the initiative and highlights breakthroughs made by the larger research community resulting from the availability of this data resource. We explore the future expansion of the data resource to include new modalities and tools for supporting life-saving research for children like Gabriella Miller.
PMID:
42607672
Bibliographic data and abstract were imported from PubMed on 18 Aug 2026.
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