Comparison of US Federal and Foundation Funding of Research for Sickle Cell Disease and Cystic Fibrosis and Factors Associated With Research Productivity.
Publication/Presentation Date
3-2-2020
Abstract
IMPORTANCE: Sickle cell disease (SCD) and cystic fibrosis (CF) are severe autosomal recessive disorders associated with intermittent disease exacerbations that require hospitalizations, progressive chronic organ injury, and substantial premature mortality. Research funding is a limited resource and may contribute to health care disparities, especially for rare diseases that disproportionally affect economically disadvantaged groups.
OBJECTIVE: To compare disease-specific funding between SCD and CF and the association between funding and research productivity.
DESIGN, SETTING, AND PARTICIPANTS: This cross-sectional study examined federal and foundation funding, publications indexed in PubMed, clinical trials registered in ClinicalTrials.gov, and new drug approvals from January 1, 2008, to December 31, 2018, in an estimated US population of approximately 90 000 individuals with SCD and approximately 30 000 individuals with CF.
MAIN OUTCOMES AND MEASURES: Federal and foundation funding, publications indexed in PubMed, clinical trial registrations, and new drug approvals.
RESULTS: From 2008 through 2018, federal funding was greater per person with CF compared with SCD (mean [SD], $2807 [$175] vs $812 [$147]; P < .001). Foundation expenditures were greater for CF than for SCD (mean [SD], $7690 [$3974] vs $102 [$13.7]; P < .001). Significantly more research articles (mean [SD], 1594 [225] vs 926 [157]; P < .001) and US Food and Drug Administration drug approvals (4 vs 1) were found for CF compared with SCD, but the total number of clinical trials was similar (mean [SD], 27.3 [6.9] vs 23.8 [6.3]; P = .22).
CONCLUSIONS AND RELEVANCE: The findings show that disparities in funding between SCD and CF may be associated with decreased research productivity and novel drug development for SCD. Increased federal and foundation funding is needed for SCD and other diseases that disproportionately affect economically disadvantaged groups to address health care disparities.
Volume
3
Issue
3
First Page
201737
Last Page
201737
ISSN
2574-3805
Published In/Presented At
Farooq, F., Mogayzel, P. J., Lanzkron, S., Haywood, C., & Strouse, J. J. (2020). Comparison of US Federal and Foundation Funding of Research for Sickle Cell Disease and Cystic Fibrosis and Factors Associated With Research Productivity. JAMA network open, 3(3), e201737. https://doi.org/10.1001/jamanetworkopen.2020.1737
Disciplines
Business Administration, Management, and Operations | Health and Medical Administration | Management Sciences and Quantitative Methods
PubMedID
32219405
Department(s)
Administration and Leadership
Document Type
Article