Dr. Diana Bianchi, Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development, Testified in Support of the Gabriella Miller Kids First Pediatric Research Program-title-h1

Dr. Diana Bianchi, Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development, Testified in Support of the Gabriella Miller Kids First Pediatric Research Program

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At the 68th Annual Meeting of the American Society for Human Genetics, held from October 16 to 19, 2018 in San Diego California, the Gabriella Miller Kids First Pediatric Research Program (Kids First) and the Gabriella Miller Kids First Data Resource Center (Kids First DRC) co-hosted a Poster Session and Meet & Greet.  The event brought together researchers, physicians, and patient and foundation representatives to learn about the Kids First program including the Kids First DRC and their recently-launched Data Resource Portal, Kids First X01 cohort projects, and Kids First sequencing centers, as well as existing collaborative efforts across all Kids First projects.  At this event, we were honored to have Dr. Diana Bianchi, Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development, as a guest.  

Dr. Bianchi serves as Co-Chair to the NIH Kids First Working Group, which oversees the program alongside the NIH Common Fund.  Since the Kids First DRC’s launch in August 2017, Dr. Bianchi has been an ardent supporter and champion of the mission to better understand the genetic causes and links between childhood cancer and structural birth defects, enabling accelerated discoveries and personalized treatment for patients diagnosed with such conditions.

On August 23, Dr. Bianchi joined her colleagues across the National Institutes of Health (NIH) to testify before the U.S. Senate Committee on Health, Education, Labor, and Pensions at a hearing entitled “Prioritizing Cures: Science and Stewardship at the National Institutes of Health.”  Senate members of the Health, Education, Labor, and Pensions Committee were informed of the myriad ways in which federal funding provided to the NIH through the 21st Century Cures Act, the Gabriella Miller Kids First Research Act, and other sources have been, and continue to be, successfully advancing public health research across a broad field.

Speaking on the Gabriella Miller Kids First Pediatric Research Program, Dr. Bianchi explained, “[The Gabriella Miller Kids First Pediatric Research Program] creates an infrastructure so that researchers can collect large cohorts of biomaterials from children with conditions such as cancer and congenital anomalies.  The infrastructure allows us to work at a very large scale, and already has had successes.”

She added, “We have a childhood cancer dataset that is already publicly available, in pediatric Ewing Sarcoma.  We also have datasets that are available for congenital heart disease, cleft palate, and Diaphragmatic Hernia. And researchers anywhere around the world can make use of that information.”

We thank Dr. Bianchi for her efforts to communicate the impact of the important research supported by the Kids First DRC to our leaders in Congress.

To view Dr. Bianchi’s complete testimony, visit https://youtu.be/xARA9XGyKSg

To view the complete testimony delivered by the directors of the National Institutes of Health, visit https://www.help.senate.gov/hearings/prioritizing-cures-science-and-stewardship-at-the-national-institutes-of-health