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Original Investigation
September 13, 2021

Correlation Between National Institutes of Health Funding for Pediatric Research and Pediatric Disease Burden in the US

Author Affiliations
  • 1Division of Emergency Medicine, Boston Children’s Hospital, Boston, Massachusetts
  • 2Department of Pediatrics, Harvard Medical School, Boston, Massachusetts
  • 3Karolinska Institutet, Solna, Sweden
  • 4Pediatric Therapeutics and Regulatory Science Initiative, Computational Health Informatics Program, Boston Children’s Hospital, Boston, Massachusetts
JAMA Pediatr. Published online September 13, 2021. doi:10.1001/jamapediatrics.2021.3360
Key Points

Question  Is National Institutes of Health (NIH) funding allocated to pediatric diseases correlated with disease burden for these conditions in the US?

Findings  In this cross-sectional analysis of 14 060 pediatric grants in the US, funding for pediatric research was correlated with a number of measures of disease burden, including measures of health care use. Certain conditions were substantially overfunded or underfunded relative to predicted funding levels based on disease burden.

Meaning  Ongoing assessment of pediatric funding patterns using a complementary set of disease measures may help inform and prioritize pediatric research funding.


Importance  The US National Institutes of Health (NIH) is the largest government funding source for biomedical research globally. Burden of disease is one of the factors considered by the NIH in making funding allocations, though it is not known how funding patterns are associated with disease burden for pediatric conditions.

Objective  To determine the correlation between NIH funding and disease burden across pediatric conditions.

Design, Setting, and Participants  This cross-sectional study evaluates NIH grants funding pediatric research from 2015 to 2018 in the US. Pediatric grants were classified according to disease categories studied. Disease burden for each category was determined using measures from the Institute of Health Metrics and Evaluation and hospitalization data from the 2016 Kids’ Inpatient Database.

Main Outcome and Measure  Correlation between NIH funding and pediatric disease burden using Spearman rank order coefficients and predicted amounts of disease-specific funding based on disease burden estimated from linear regression models.

Results  This study analyzed 14 060 disease-specific pediatric grants awarded by the NIH from 2015 to 2018 in the US. Annual funding for disease categories ranged from $0 to $382 849 631. Funding for pediatric research was correlated with pediatric disability-adjusted life-years (DALYs), deaths, years lived with disability, and years of life lost (r, 0.56-0.63; P < 0.001 for all measures). There was also a correlation between funding and hospital-based metrics, including hospital days, number of hospital admissions, and hospital charges (r, 0.67-0.69; P < .001 for all measures). Eight disease categories received greater than $500 million more than predicted levels relative to DALYs, while 5 disease categories were funded more than $50 million less than predicted levels. Based on predicted levels of funding, congenital birth defects; endocrine, metabolic, blood, and immune disorders; and HIV/AIDS were the most overfunded categories relative to DALYs and hospital days. Conditions identified as most underfunded differed depending on use of DALYs or hospital days in estimating predicted funding levels.

Conclusions and Relevance  NIH funding for pediatric research was correlated with pediatric disease burden in the US with variable correlation based on the disease metric applied. There was substantial overfunding and underfunding of certain conditions. Ongoing evaluation of pediatric funding patterns using a complementary set of disease measures may help inform and prioritize pediatric research funding.

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    1 Comment for this article
    NIH funding addresses GLOBAL pediatric disease burden, not just disease burden in the US
    Lynne Mofenson, MD | EGPAF
    The authors appear to be basing their conclusions on the burden of pediatric disease in the United States. However, NIH research covers global priorities for pediatric research. For example, while in the US the number of new pediatric infections is currently under 100, globally there were 150,000 new pediatric infections in 2020, and progress on prevention of new pediatric infections has stalled, as in 2019 there were also 150,000 new pediatric HIV infections. Thus, basing comments about NIH pediatric funding based on the various disease burdens in the United States alone seems misleading. The authors really need to be looking at various disease burdens in children globally given the funding actually is based on global health issues.