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

Abstract

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 PARTICIPANTSThis 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 MEASURECorrelation 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. RESULTSThis 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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“…However, even with active CABs, there are important gaps in study participation in clinical trials, particularly in special populations such as elderly patients, rural communities, historically under-represented minorities, and children [8]. The under-funding of child health-related research, particularly when calculated by resources invested by the NIH as a function of the relative population distribution of children in the USA, has been noted in previous studies [17][18][19]. These gaps have only been exacerbated by the COVID-19 pandemic [2][3][4].…”

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“…Furthermore, priorities for federal pediatric research support may need to be adjusted to account for rapidly changing healthcare needs 4 and pediatric disease burden. 5 …”

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“…Research on headache disorders in children and adolescents is similarly underfunded. A recent study (fiscal years 2015–2018) examined NIH funding for pediatric research relative to disease burden assessed by DALYs, deaths, years lived with disability, years of life lost, or hospitalizations 17 . Comparing actual to predicted funding levels based on DALYs, headache disorders were the most underfunded of all pediatric diseases.…”

“…A recent study (fiscal years 2015-2018) examined NIH funding for pediatric research relative to disease burden assessed by DALYs, deaths, years lived with disability, years of life lost, or hospitalizations. 17 Comparing actual to predicted funding levels based on DALYs, headache disorders were the most underfunded of all pediatric diseases. Other data suggest that, even among funded headache medicine projects, children and adolescents are rarely the study population; only 5.4% of NIH funded projects included pediatric participants.…”