About USIDNET

The United States Immunodeficiency Network (USIDNET) is a research consortium established to advance scientific research in the field of primary immunodeficiency diseases/inborn errors of immunity.

USIDNET data has supported over 70 publications and provides a body of data that has informed on natural history, morbidities and outcomes of inborn errors of immunity.

We currently have two datasets available to support research questions.

USIDNET V1 is a registry with >5000 patients.  See our publications list for examples of research supported by USIDNET V1.

USIDNET V2 is a new standardized data registry with yearly updates on patients across the USA and Canada.  It is still being populated with data and we will release this version for data queries soon.  See our participating sites list to see where the data comes from.

History

In 1992, the National Institute of Allergy and Infectious Disease (NIAID), along with the National Institutes of Health (NIH) contracted with the Immune Deficiency Foundation 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 additional immunodeficiency diseases: 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 leading physician-scientists and the Immune Deficiency Foundation to improve knowledge regarding natural history and complications of all immunodeficiencies/inborn errors of immunity. In October 2003, NIAID and the National Institute of Child Health and Human Development (NICHD) established a five-year contract to support USIDNET.

NIH most recently refunded USIDNET in September 2022 as a suite of services to clinicians, researchers and patients. The registry component will collect data directly from electronic medical registries. If you wish to be a site to contribute data, please reach out to us by emailing usidnet@chop.edu or by completing the form on the “Join USIDNET” page.