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 eHealthRecord.
The USIDNET is governed by a Steering Committee of top physicians.
USIDNET Patient Registry
This graph depicts the number and proportion of patients in each category of diagnoses. The category, Visits in Progress, represents patients who have consented but whose data have not been entered yet. The category, QoL, represents ‘Quality of Life’ evaluations that were completed by patients.