Disease Registry
Thanks to the dedicated work of SMConsulting, an SAIC company, USIDNET operates a large database of patient information for your use.
Purpose, 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 Onika Davis or Tiffany Sweetwine, USIDNET team, at odavis@primaryimmune.org, or tsweetwine@primaryimmune.org
