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USIDNET Patient Registry



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Register Today and Help Advance Research

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.

Join thousands of patients living with primary immunodeficiency diseases from across the country and register with the United States Immunodeficiency Network (USIDNET) patient registry.

What is the USIDNET Registry?

It is a national patient consented registry of 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).

Why Register?

Living with a primary immunodeficiency disease makes your life experiences unique. However, when your experiences and those of other patients are examined collectively, common findings can help advance vital research and help improve the quality of life for the entire primary immunodeficiency community. The more patients registered the more data researchers have to further their work. 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
  • NEMO
  • Hyper IgM Syndrome
  • Complement Deficiencies and Leukocyte Adhesion Deficiency

Advance Research

Your participation in the USIDNET registry adds value to an important resource used by the medical community to examine the diagnosis and treatment of primary immunodeficiency diseases. Since no one provider sees enough patients to create a representative picture of these rare diseases, the USIDNET registry offers this to healthcare providers.

Contribute to a Bright Future

Your one-time registration contributes to the advancement of the primary immunodeficiency community. It also enables USIDNET to receive your updated medical information over time, allowing researchers to review long-term data for years to come. Researchers are already taking advantage of USIDNET data. Since USIDNET was created in 2003, the medical community has regularly used the registry as a resource for journal publications. Scientific study

is the only way to increase the possibilities for better diagnosis and treatment. The more possibilities we have, the brighter the future for our community.

Simple, Secure, Cost-Free

Signing up for the USIDNET Registry is simple. The USIDNET team will walk you though the easy enrollment and consent process. Rest assured that your identity will be protected in this secure, confidential HIPAA compliant registry, and there is no cost for you to participate.

Enroll today!

Enroll in the USIDNET registry today by calling 866.939.7568 or email contact@usidnet.org. Once you consent, the work is completed by your provider’s office and the USIDNET team. Basic medical information and data related to your diagnosis will be collected. You can also opt to be contacted about participating in clinical trials.

Visit www.USIDNET.org for more information