Automated Data Extraction Model for the USIDNET Registry: Bigger, Faster, and Better Data Collection

The United States Immunodeficiency Network (USIDNET) is an NIH-funded research consortium that advances scientific investigation on inborn errors of immunity (IEI). Formerly, USIDNET Registry data were collected via an opt-in system with patient informed consent. The current Registry uses semi-automated, de-identified data extraction from EPIC with a consent waiver. This study was performed to assess whether the new method improved enrollment using data from one site. Diagnoses, sex, and age within the new (n= 1145) and old (n= 551) registries were defined. The new registry enrolled twice and many subjects and had six times more clinical features recorded per patient on average and 22 times more laboratory data recorded per patient. Response to queries is much more rapid, with execution of a database query within a day. There were differences in enrollment demographics depending on underlying diagnosis. The design of the new USIDNET Registry may better capture a greater number and representation of patients compared to the old Registry.