Infusing equity in preclinical research and therapeutic development: Bridging the translational and clinical divide between diagnosis and treatment for rare diseases

Authors

• TL Rogers
• PS Huston
• EK Taylor
• JM Cohen
• M Washabaugh
• Y Shaikh
• TM Habtu
• SH Kinling
• CL Purdy
• L Toney
• D Lo
• E Ottinger
• SJ Haugabook

Abstract

The necessary and critical focus on addressing disparities to advance health equity in our society is most often applied within the context of patients’ access to clinical research and care, and the resulting direct interactions with the healthcare system and its providers. However, the space between the diagnostic journey and clinical care delivery for patients—namely preclinical research and development—is generally excluded from conversations within the larger biomedical research enterprise around infusing equity. If broached, the topic is often sidelined by the belief in the presumed objectivity of preclinical research and development.
Effects of this exclusion are especially reflected in rare disorders that are also burdened by broader infrastructural and global disparities in the healthcare system’s lack of knowledge of rare diseases and existing diagnostic criteria, inadequate access to treatment(s), uncoordinated and limited access to research resources for discovery and drug development efforts. These challenges often result in poor data collection and low diagnosis rates that broaden the gaps in knowledge for a given disease and further exacerbate existing disparities. Race, ethnicity, gender, and economic status have been shown to cause profound differences in how identifying members of and between these groups are treated inequitably by the biomedical research enterprise and the healthcare system that are often not considered within the context of rare diseases.
The NCATS Therapeutics Development Branch seeks to explore the intersections of these systemic and structural inequities with respect to preclinical research and therapeutic development.

Scientific Focus Area: Health Disparities

This page was last updated on Tuesday, August 6, 2024