The United States Immunodeficiency Network (USIDNET) is a research consortium established to advance scientific research in the field of primary immunodeficiency diseases (PI) by assembling and maintaining a registry of clinical data from patients with PI, providing education and mentoring for young investigators and physicians in the field of PI, and acting as a resource for clinical and laboratory research.
A program of the Immune Deficiency Foundation (IDF), USIDNET is funded by a cooperative agreement, U24AI086037, from the National Institute of Allergy and Infectious Diseases (NIAID) and the National Institutes of Health (NIH), an agency of the Department of Health & Human Services. NIAID supports research to advance the understanding of transplantation and to prevent, diagnose and treat infections and Immune-mediated illnesses. IDF provides administrative support for USIDNET and developed the initial Registry of patients with PI that has grown to become the current Registry.
Our national patient-consented registry is designed to obtain longitudinal data on a large number of individuals with known or suspected PI. By putting information about individuals with PI from many places into a single registry, we hope to gain knowledge about the rate of occurrence, causes, natural history, and outcomes of PI.
In 1992, the National Institute of Allergy and Infectious Disease (NIAID) along with 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).
At the same time, the sponsoring Institutes recognized that there was a shortage of clinical investigators who had made a career choice to focus on the study and treatment of PI. With the encouragement of IDF, USIDNET was formed by the leading physician-scientists in the US 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 USIDNET. The operation of the new research consortium began and the existing registry was converted into a next generation web-based registry to collect clinical information.