Researchers must understand how well their participants reflect the broader patient population to know if their conclusions are generalizable. Underrepresentation of certain groups can lead to biased study outcomes. Patients from racially and ethnically marginalized backgrounds have been traditionally underrepresented in health research, and this may also be the case in pediatric rheumatology research. This project looks at whether children with lupus, arthritis, and dermatomyositis
participating in a research program are representative of the broader patient population at six pediatric rheumatology practices. The project will set the stage for larger, more comprehensive effort to collect data from over 30 sites across North America. The project will serve as an important first step in understanding and improving representation in North American pediatric rheumatology research.