NIH Leaders Join Congressional Roundtable on Advancing Pediatric Medical Research

September 27, 2024
All of Us Chief Executive Officer Dr. Josh Denny, (left) Congresswoman Yadira D. Caraveo (D-CO) and Mark Del Monte, J.D. Chief Executive Officer of the American Academy of Pediatrics.

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All of Us Research Program highlights need for health research through the lifespan

National Institutes of Health (NIH) leaders recently joined a congressional roundtable on Capitol Hill to discuss the importance of pediatric research to better understand the drivers of disease across the lifespan.

Congresswoman Yadira D. Caraveo, (D-CO), M.D., a pediatrician, hosted the panel that included NIH’s All of Us Research Program’s Chief Executive Officer Josh Denny, M.D., M.S., All of Us Director of Pediatrics Sara Van Driest, M.D., Ph.D., and Rohan Hazra, M.D., director of the Division of Extramural Research at the Eunice Kennedy Shriver National Institute of Child Health and Human Development. 

Mark Del Monte, J.D., chief executive officer of the American Academy of Pediatrics, moderated the discussion. Joining NIH leaders on the panel were pediatric experts, Tomi Pastinen, M.D., Ph.D., director of the Center for Pediatric Genomic Medicine at Children’s Mercy, Kansas City, MO., and Beth Anne Tarini, M.D., co-director of the Center for Translational Research at Children’s National, Washington, D.C. 

All of Us recently began limited enrollment of children, starting with the youngest group, infants through age 4. More than 150 children have enrolled so far through five partner organizations. Pending the availability of funds, the program hopes to expand pediatric enrollment to include older children and additional sites nationwide in the future.

Del Monte, J.D., chief executive officer of the American Academy of Pediatrics, began by asking panelists to explain why children should be included in medical research.

“Children are 20% of this country’s population and 100% of its future,” Dr. Denny said. “The data from children and families is key to disentangling the biological, social, and environmental influences on our health over time.” 

Dr. Beth Anne Tarini, co-director of the Center for Translational  Research at Children’s National, Washington D.C., (left) Dr. Sara Van Driest, All of Us director of pediatrics, Rohan Hazra, M.D., director of the Division of Extramural Research at the Eunice Kennedy Shriver National Institute of Child Health and Human Development, and Tomi Pastinen, M.D., Ph.D., director of the Center for Pediatric Genomic Medicine at Children’s Mercy, Kansas City, MO.
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All of Us aims to gather health data during this key developmental period and throughout participants’ health journey into adolescence and beyond. Dr. Van Driest emphasized the need for a large pediatric database that researchers can use to advance discoveries on childhood diseases.

“We know that certain conditions only affect children,” Dr. Van Driest said. “If we want to learn more about health and disease in children, we need to expand participation to kids. If we want to improve health for all, we need to include kids.” 

Dr. Hazra also emphasized the unique quality of the All of Us dataset with its robust, diverse population. “The size and scope of All of Us doesn’t exist anywhere else,” Dr. Hazra said. “This is a foundational resource that will catalyze all sorts of research.” 

Dr. Van Driest agreed saying that even at this early stage of pediatric enrollment, the program is doing as well as adult enrollment in engaging populations historically left out of research. This includes racial and ethnic groups, people with disabilities, seniors, rural populations, and those with lower income and education levels.

Pediatric enrollment in All of Us is currently ongoing at an initial set of sites:

●      All of Us, Pennsylvania with the University of Pittsburgh

●      University of Arizona and Banner Health

●      Henry Ford Health in Michigan

●      San Ysidro Health in California

●      Community Health Center, Inc. in Connecticut

For more information about All of Us, visit www.allofus.nih.gov.

Image Caption 1: All of Us Chief Executive Officer Dr. Josh Denny, (left) Congresswoman Yadira D. Caraveo (D-CO) and Mark Del Monte, J.D. Chief Executive Officer of the American Academy of Pediatrics.

Image Caption 2: Dr. Beth Anne Tarini, co-director of the Center for Translational  Research at Children’s National, Washington D.C., (left) Dr. Sara Van Driest, All of Us director of pediatrics, Rohan Hazra, M.D., director of the Division of Extramural Research at the Eunice Kennedy Shriver National Institute of Child Health and Human Development, and Tomi Pastinen, M.D., Ph.D., director of the Center for Pediatric Genomic Medicine at Children’s Mercy, Kansas City, MO.