Advance Research – Improve Lives
The United States Immunodeficiency Network (USIDNET) is a research consortium established to advance scientific research in the field of primary immunodeficiency diseases. The current focus of this initiative is on the primary immunodeficiency disease registry, and education and mentoring for young investigators. 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. IDF provides administrative support for USIDNET.
Healthcare providers can help build the USIDNET by encouraging patients with primary immunodeficiency diseases to participate in the USIDNET Registry, submitting queries for research and mentoring young investigators.
What Is the USIDNET Registry?
It is a national patient consented registry for individuals with primary immunodeficiency diseases. The goals are to advance research in the field and to improve the quality of life of patients. It is managed by leading immunologists and administered by the Immune Deficiency Foundation (IDF).
Encourage Your Patients to Register
Each patient adds tremendous value to USIDNET. Ask patients to register and explain that no one provider sees enough patients to form a representative picture of these rare diseases, so their participation is vital. Assure them that the registry is secure, confidential and HIPAA compliant. Registration is simple and cost free.
Use USIDNET as a Resource
Submit a query to help with treatment and/or research. Physicians can join our Disease Specific Working Groups. The registry houses information on several disease states including:
- Severe Combined Immune Deficiency
- Common Variable Immune Deficiency and other Hypogammaglobulinemias
- X-Linked Agammaglobulinemia and other Agammaglobulinemas
- Chronic Granulomatous Disease
- Wiskott-Aldrich Syndrome
- DiGeorge Syndrome
- Hyper IgM Syndrome
- Complement Deficiencies and Leukocyte Adhesion Deficiency
USIDNET serves to:
- Improve understanding of the prevalence of these diseases
- Provide longitudinal patient data
- Evaluate measures of quality of life of patients
- Examine side effects of treatment protocols
- Determine the natural history of these diseases 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