Editor’s note: For more coverage of the 2024 AAP National Conference & Exhibition, visit https://bit.ly/AAPNationalConference2024.
Severe budget cuts this year have hampered enrollment of children and adolescents in the National Institutes of Health’s (NIH’s) All of Us Research Program, but the program’s pediatric director sees hope in the next federal budget proposal and an energized physician workforce.
“Although we’re at 150 kids today in the program, our goal is to enroll at least 150,000 children across the country,” Sara Van Driest, M.D., Ph.D., FAAP, said at the closing plenary session of the AAP National Conference & Exhibition in Orlando. “And in order to achieve that goal, we’re going to need your help.”
The All of Us Research Program aims to collect and study health data from at least a million Americans who reflect the country’s diversity to “accelerate health breakthroughs, enabling individualized prevention, treatment, and care for all of us.” Participants can choose to share electronic health records, survey responses, physical measurements and biosamples. Data are made available to universities, health associations, hospitals and other organizations to aid their research.
“Hundreds of thousands of individuals have chosen to join us and be our partners in this mission,” Dr. Van Driest said.
She presented examples of findings from the All of Us database, including a study of particular interest to an AAP gathering. Working from a pool of 4,000 All of Us participants, researchers found that memory loss, chronic fatigue, nerve problems and seizures were more common in teens and young adults who had survived cancer than those who never had cancer.
Even with 413,000 survey respondents as of January 2024, the All of Us database lacks one important group of participants.
“Here I am at the American Academy of Pediatrics to tell you that, yes, we need to do a lot more work to include pediatric participants as part of this dataset,” Dr. Van Driest said.
The program’s No. 1 priority in 2023, she said, was to enroll children and teens. By December, 25 pediatric participants had been enrolled as part of a readiness assessment of systems and processes.
A 34% cut to the program’s budget last spring came just as the pediatric program was beginning to ramp up. “That’s not a little trimming. That’s not a little belt-tightening. That’s a really big, significant cut to the program,” she said.
But hope lies in the federal budget proposal for the 2025 fiscal year, which calls for restoring funding to the 2023 level.
More visibility for the program came during a September roundtable in Washington, D.C., with pediatrician and Colorado Rep. Yadira Caraveo, M.D. The panel included Dr. Van Driest and was moderated by AAP CEO/Executive Vice President Mark Del Monte, J.D.
Dr. Van Driest urged her pediatric colleagues to share research questions with her that will change their practice, be vocal supporters of the program and to remain optimistic.
“I want to anticipate this future where we have a robust national pediatric cohort that reflects the diversity of all of our patients,” she said, “and that supports individualized prevention, treatment and care for all children.”
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