The United States Immunodeficiency Network (USIDNET) is a research consortium established to advance scientific research in the field of primary immunodeficiencies (PI).
The Immune Deficiency Foundation (IDF) provides administrative support for USIDNET and developed the initial Registry of individuals with PI that has grown to become the current Registry.
This national patient-consented registry was designed to obtain longitudinal data on a large number of individuals with known or suspected PI. USIDNET data has supported over 70 publications and provides a body of data that has informed on natural history, morbidities and outcomes of PI.
In 1992, the National Institute of Allergy and Infectious Disease (NIAID), along with the National Institutes of Health (NIH) contracted with IDF to develop a registry of patients with Chronic Granulomatous Disease (CGD). With the success of that initial registry, NIAID expanded the contract in 1998 to include eight different immunodeficiency diseases, including (in addition to CGD): X-linked Agammaglobulinemia (XLA), Common Variable Immune Deficiency (CVID), X-linked Hyper IgM (X-HIGM), Leukocyte Adhesion Deficiency (LAD), Severe Combined Immune Deficiency (SCID), DiGeorge Syndrome (DGS) and Wiskott-Aldrich Syndrome (WAS).
USIDNET was formed by the leading physician-scientists in the U.S. who had devoted their careers to the study and care of patients with PI, and in October 2003, NIAID and the National Institute of Child Health and Human Development (NICHD) established a five-year contract with IDF to support USIDNET. NIH now funds USIDNET to collect data directly from electronic medical registries. If you wish to be a site to contribute data, please reach out to us by emailing firstname.lastname@example.org.