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USIDNET for Healthcare Professionals
The United States Immunodeficiency Network (USIDNET) is a research consortium established to advance scientific research in the field of primary immunodeficiency disorders. The current focus of this initiative is on the Primary Immunodeficiency Disease Registry and Education and Mentoring for young investigators.
The primary objective of USIDNET is the collaboration of physicians from all over the United States to form a comprehensive Primary Immunodeficiency Diseases Registry that serves to:
- 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 (SCID), Common Variable Immune Deficiency (CVID) and other Hypogammaglobulinemias, X-Linked Agammaglobulinema (XLA) and other Agammaglobulinemas, Chronic Granulomatous Disease (CGD), Wiskott-Aldrich Syndrome (WAS), DiGeorge Syndrome (DGS), NEMO, Hyper IgM Syndrome (HIGM), Complement Deficiencies and Leukocyte Adhesion Deficiency (LAD).
Physicians with primary immunodeficient patients can play a part in the development of this valuable resource by enrolling their patients in this HIPAA compliant registry. All patient data will be combined with thousands of others to provide a comprehensive database for the advancement of collaborative research. The identity of enrolled patients will be kept strictly confidential. If you would like to learn more, please visit www.usidnet.org.
The Education and Mentoring component of USIDNET encourages young investigators to enter the field of primary immunodeficiency. This program provides travel grants for investigators to attend research conferences and have the opportunity to present his or her research results. Travel grants also permit investigators to visit other institutions to learn about new research techniques that are not available at their home institutions. Additionally, the Education and Mentoring component helps to sponsor a week long retreat, the Clinical Immunology Summer Program, where young investigators can participate with senior physicians to advance their understanding about primary immunodeficiency.
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 IDF.
