Self-reporting of psychiatric illness in an online patient registry is a good indicator of the existence of psychiatric illness

Online registries offer many advantages for research, including the ability to efficiently assess large numbers of individuals and identify potential participants for clinical trials and genetic studies. Of particular interest is the validity and utility of self-endorsement of psychiatric disorders in online registries, which, while increasingly more common, remain understudied. We thus assessed the comparability of prevalence estimated from self-endorsement of psychiatric disorders in one such registry, the Brain Health Registry (BHR) to prevalence computed from large US-based epidemiological studies and the degree to which BHR participants report psychiatric disorders consistently. We also examined the concordance between self-report and clinically determined diagnoses of various DSM-5 psychiatric disorders in a subset of participants who underwent direct assessments and identified possible reasons for discordance. Rates of self-reported psychiatric disorders were closest to previously reported population prevalence rates when endorsed at multiple timepoints, and accuracy was at least 70% for all except Hoarding Disorder as compared to the clinical diagnoses. Clinical data suggested that self-endorsement of a given psychiatric diagnosis was indicative of the presence of a closely related condition, although not necessarily for the specific disorder, with the exception of major depressive disorder, panic disorder, and hoarding disorder, which had high positive predictive values (85%, 73%, 100%, respectively). We conclude that self-reporting of psychiatric conditions in an online setting is a fair indicator of psychopathology, but should be accompanied by more in-depth interviews if using data from a participant for a specific disorder.