Learn About the USIDNET Registry

Currently including over 30 different molecular genetic disorders.

Learn More About Our Registry

USIDNET Cell Repository

Learn more about the

U.S. Immunodeficiency Network

The United States Immunodeficiency Network (USIDNET), an NIH-funded research program of the Immune Deficiency Foundation (IDF), was established to advance scientific research in primary immune deficiency diseases (PI) and specifically to:

  • 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 primary immunodeficiency diseases.
  • 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.

The USIDNET is governed by a Steering Committee of top physicians.

USIDNET Patient Registry

As of 01/01/2018 total registration includes 6,584 participants, including
1,696 PICONNECT participants awaiting a clinician-confirmed diagnosis
(click for more info about PICONNECT).

Clinician-confirmed diagnoses of registry participants

For more USIDNET statistics, click here

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