Disease Registry

Thanks to the dedicated work of SMConsulting, an SAIC company, USIDNET operates a large database of patient information for your use.  

man working with testubesPurpose, Scope, and History:

The purpose and scope of this project is to assemble and maintain a registry of residents with primary immunodeficiency diseases. The project was started in 1992 with the "Registry of U.S. Residents with Chronic Granulomatous Disease". Since then, the registry has been expanded and now collects data on all primary immunodeficiency disorders.  The following are just a few of the diseases housed in the registry:

  • Chronic Granulomatous Disease - See Winkelstein, Marino, Johnston et al., " Chronic Granulomatous Disease: Report on a National Registry of 368 Patients ", Medicine, Vol. 79, No.3, May 2000, p.155-69.
  • Common Variable Immunodeficiency Disease
  • DiGeorge Anomaly
  • Hyper IgM Syndrome - See Winkelstein, Marino, Ochs et al., " The X-linked Hyper-IgM Syndrome - Clinical and Immunologic Features of 79 Patients", Medicine, Vol. 82, No. 6, November 2003, p.373-83.
  • Leukocyte Adhesion Defect
  • Severe Combined Immunodeficiency Disease
  • Wiskott-Aldrich Syndrome
  • X-Linked Agammaglobulinemia

Major Purposes:

  • To provide a minimum estimate of the prevalence of each disorder in the United States
  • To provide a comprehensive clinical picture of each disorder
  • To provide a resource for clinical and laboratory research

Contact and Access:

Physicians who would like to register their patients or access the registry are encouraged to contact us at Contact@USIDNET.org

The United States Immunodeficiency Network, (USIDNET) a program of the Immune Deficiency Foundation (IDF) is funded in part by 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. USIDNET administrative support is provided by the
Immune Deficiency Foundation (IDF).