Project 3. Modernize the digital research infrastructure of The PRIDE Study to better characterize the health and inequities affecting sexual and gender minority people.
Limited data inhibits our ability to describe the factors influencing health and disease among sexual and gender minority (SGM) communities, to identify inequities, and to develop testable interventions. The Population Research for Identity and Disparities for Equality (PRIDE) Study is a national, online, longitudinal cohort study of SGM adults in the U.S. that examines how the identity and experiences of SGM people influences their physical, mental, and social health. Its current secure, cloud-based infrastructure was built in 2016, and a number of issues limit the full use of this real-world data for translational research. Properly investigating SGM health requires collection of specialized data such as a detailed gender-affirming hormone history (medication, dose, route, frequency, start/stop dates) and timed collection of gender-affirming surgery data to assess expectations, outcomes, complications, and satisfaction. A renovation of The PRIDE Study’s digital infrastructure will curate new types of real-world data for translational research, improve the user experience for retention and data accuracy, and develop a realworld data warehouse for efficient, effective data sharing and analysis to improve our understanding of these underrepresented and vulnerable communities.