Trends in National Institutes of Health-Funded Congenital Heart Disease Research from 2005 to 2015

Abstract

In an era of ongoing need for research to enable evidence-based care for the expanding population with congenital heart disease (CHD), economic fluctuations have impacted research funding. We characterize trends in NIH-funded CHD research from 2005 to 2015. We searched the NIH RePORTER database from 2005 to 2015 using the terms “congenital heart” and “cardiac morphogenesis”. Projects were characterized by year, institute, mechanism, costs, type and topic, and funding trends were analyzed. From 2005 to 2015, NIH funded 633 CHD research projects with total costs of $991 million. The National Heart, Lung, and Blood Institute funded 83% of CHD projects (528, $857 million). The R01 mechanism was used for 45% of projects (288, $421 million). Projects were 70% basic/early translational research, 27% clinical research, and 3% both. Cardiac developmental biology was the most common topic (52%), followed by technology/therapy development (15%), and diagnosis/management (12%). The total number of CHD projects ranged from 153 to 221 per year (30–58 new projects/year), and costs per year ranged from $58 to $116 million. The number of projects and total costs increased until 2012, but decreased again thereafter. CHD research did not experience as much erosion as overall NIH purchasing power; in constant dollars, CHD research funding levels in 2015 were $12 million higher than those in 2005. The NIH supported a diverse portfolio of CHD projects from 2005 to 2015. Support of CHD research projects trended upward until 2012, but declined thereafter due to fiscal austerity measures.

Congenital Heart Disease: The State-of-the-Art on Its Pharmacological Therapeutics

“…Naturally, the use and study of analyzed drugs in this review demand accurate clinical trials. A trend analysis of NIH-funded clinical trials addressing CHD showed that nearly less than 0.45% of the studies were aimed at the pediatric population, compared with the remaining 99.95% of clinical trials for general cardiovascular disease [ 185 ]. In terms of the current challenges of clinical trials, we concur on maximizing the study of cohorts [ 186 ], increasing the sample size regardless of the management issues of younglings [ 170 ], and enrolling heterogeneous patients, thus avoiding any neglection of participants, e.g., trisomy-21 patients [ 187 ].…”

“…Additionally, new drugs should be developed to target specific genomic characterizations and variations in the RAAS or adrenergic signaling pathways to better improve responses to treatment and eventually ventricular function and survival of patients with CHD [ 189 ]. Likewise, a personalized approach should be sought, from prenatal screening to planning during infancy and childhood, and an eventual transition to adulthood with a multidisciplinary combination of interventions, including surgical, pharmacological, and percutaneous options [ 190 ], consistent with the aim to boost the impact of investment on health-directed CHD research [ 185 ].…”

Health Equity and Policy Considerations for Pediatric and Adult Congenital Heart Disease Care among Minoritized Populations in the United States

“…The National Institutes of Health (NIH) has increasingly funded research projects for congenital heart disease (CHD) over the last decade. From 2005 to 2015, USD 991 million was awarded to 633 projects, mainly in basic or translational research focused on cardiac developmental biology [75]. In 2018, the Congenital Heart Futures Reauthorization Act was signed into law to enhance research and surveillance efforts at the Centers for Disease Control and Prevention and the NIH, specifically toward studying CHD across the lifespan [76].…”

Catalysts for Change: The Role of Nonprofits in Solving Single Ventricle Heart Disease

“…Remarkably, the National Institutes of Health (NIH) did not recognize CHDs as a funding category prior to 2016, making data on prior investments difficult to accurately quantify [ 21 ], but also further underscoring the lack of emphasis on this field. Since its inception, federal funding in CHDs has remained stagnant, with a nominal increase of less than 5% annually, whereas NIH investment in Alzheimer’s has increased an average of 27% each year over the same period [ 20 ].…”