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The United States Immunodeficiency Network (USIDNET) is a research consortium established to advance scientific research in the field of primary immunodeficiency diseases (PI). 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) a part of 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 Immunemediated illnesses. USIDNET is governed by a Steering Committee of leading immunologists.


USIDNET was established to advance scientific research in PI and specifically to:

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  • Assemble and maintain a registry of validated data from patients with PI in order to provide a comprehensive picture of each disorder and act as a resource for clinical and laboratory research.
  • Maintain an open and unrestricted central repository of rare materials, such as cell lines derived from samples of patients with PI.
  • Provide multifaceted mentoring programs to introduce new investigators into the field and stimulate interest and research in PI.
  • Assist highly qualified junior faculty or committed senior fellows for travel grants to attend focused PI meetings.
  • Interface with the Disease-specific Working Groups (DSWG) to foster novel research initiatives.
  • Launch the new initiative for collecting data on infants with abnormal newborn screening.
  • Engage the patient community through services such as the IDF ePHR and PI CONNECT.

How can patients with PI participate in USIDNET?

Join the registry! Patients can consent into the USIDNET registry by creating an IDF ePHR account and consenting into PI CONNECT. Living with PI makes your life experiences unique. However, when your experiences and those of other patients are examined collectively (all de-identified), common findings can help advance vital research and help improve the quality of life for the entire PI community. The more patients registered, the more data researchers have to further their work.


How can healthcare providers be a part of USIDNET?

Healthcare providers can help build USIDNET by encouraging patients with PI to participate in the USIDNET registry by consenting into PI CONNECT. They can also submit queries for research and mentor young investigators. For more information, visit www.usidnet.org or call 866-939-7568.