Count Me In!
Be involved with a comprehensive database for the advancement of collaborative research for primary immunodeficiency diseases.
The United States Immunodeficiency Network (USIDNET) is a research consortium established to advance scientific research in the field of primary immunodeficiency disorders. One of its main initiatives is the Primary Immunodeficiency Disease Registry. This registry will:
- Improve understanding of the prevalence of these disorders
- Provide longitudinal patient data
- Evaluate measures of quality of life of patients
- Examine side effects of treatment protocols
- Determine the natural history of these disorders and establish genetic correlations
- Provide a centralized informational resource for clinical and laboratory research
- Examine the range of symptoms experienced by this patient population
- Combine the experiences of many patients to form a comprehensive picture of these diseases
The Registry houses information on several disease states including Severe Combined Immune Deficiency, Common Variable Immune Deficiency and other Hypogammaglobulinemias, X-Linked Agammaglobulinema and other Agammaglobulinemas, Chronic Granulomatous Disease, Wiskott-Aldrich Syndrome, DiGeorge Syndrome, NEMO, Hyper IgM Syndrome, Complement Deficiencies and Leukocyte Adhesion Deficiency.
The success of this registry depends upon patients and families who are willing to submit their medical information to be combined with thousands of others to establish this valuable set of data. The identity of the enrolled patients will be kept strictly confidential. If you would like to learn more, please visit www.usidnet.org.
USIDNET is funded by The National Institute of Allergy and Infectious Diseases (NIAID) and The National Institute of Child Health and Human Development (NICHD), which are components of the National Institutes of Health (NIH), an agency of the Department of Health and Human Services. NIAID supports research to advance the understanding of transplantation and to prevent, diagnose and treat infectious and immune-mediated illnesses. USIDNET administrative support is provided by the Immune Deficiency Foundation.