USIDNET Has Robust Longitudinal Data Across Multiple EMR Domains

Introduction The United States Immunodeficiency Network (USIDNET) collects de-identified patient data from hospitals across the country to study inborn errors of immunity (IEI). The registry contains records on >6,000 patients with IEI currently. The longitudinal data have been extracted back to 2018. This registry represents a critical resource for research on IEI. This study was done to evaluate the registry for its data quality. Methods PHIdentifier runs on a secure, high-performance computing (HPC) environment to efficiently process large volumes of text data to perform a multilayered de-identification process. The model’s responses are combined with rule-based checks to ensure that only sensitive information is replaced with placeholders, preserving all other clinical content. This has allowed a waiver of consent, which has facilitated enrollment. The current registry, as of January 2026, had field counts extracted for this study on data quality. Results The registry contains 6,272 patients. 45% are female. The predominant ethnicity was non-Latino, 4,143 (66%). The most frequently enrolled races reported were white (71%), other (8%), and black or African American (7%). Demographic data were found for 100% of enrollees. Social history was found for 88% of subjects, diagnosis for 77%, medications for 73%, immunizations for 69%, and allergies for 56%. The registry contains >1 million medications on 4,485 patients, >8,000 imaging reports on 2,793 patients, and >50,000 laboratory studies on 4,262 patients. These data represent a comprehensive landscape of 6,272 patients with IEI. Conclusion USIDNET is a very large registry of patients with robust longitudinal data of varying types, making it a valued resource for the community. Data requests are accepted on a rolling basis, and assistance is available for statistical support for those submitting queries producing large or complex data sets.