About the network
About USIDNET
The United States Immunodeficiency Network is a research consortium established to advance scientific research in primary immunodeficiency diseases/inborn errors of immunity.
Registry research
Two datasets support research questions
USIDNET data have supported research on the natural history, morbidities, and outcomes of inborn errors of immunity.
USIDNET V1 is a registry with more than 5,000 patients. See the publications list for examples of supported research.
USIDNET V2 is a standardized data registry with yearly updates on patients across the USA and Canada. Review the Queries page for current data-query context and the participating sites that contribute data.
History
Built through decades of collaboration
NIAID, along with NIH, contracted with the Immune Deficiency Foundation to develop a registry of patients with Chronic Granulomatous Disease (CGD).
After the initial registry's success, NIAID expanded the contract to include X-linked Agammaglobulinemia, Common Variable Immune Deficiency, X-linked Hyper IgM, Leukocyte Adhesion Deficiency, Severe Combined Immune Deficiency, DiGeorge Syndrome, and Wiskott-Aldrich Syndrome.
Leading physician-scientists and the Immune Deficiency Foundation formed USIDNET to improve knowledge of the natural history and complications of immunodeficiencies/inborn errors of immunity. NIAID and NICHD established a five-year contract to support the network.
NIH most recently refunded USIDNET in September 2022 as a suite of services to clinicians, researchers, and patients. The registry component collects data directly from electronic medical registries.
Participate
Contribute to the network
Institutions interested in contributing data can contact usidnet@chop.edu or complete the form on the Join USIDNET page.