History
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 contact@usidnet.org.