The Primary Immunodeficiency (PI) Diseases Registry collects validated data on all PI diagnoses from patients who give Informed Consent. The de-identified data in the registry is freely disseminated to those with research questions about PI diseases.
Main Areas of Focus
- To assemble and maintain a patient-consented registry of validated clinical, molecular, and laboratory data from Primary Immunodeficiency Diseases (PIDD) patients in the United States and Canada
- Registry of validated clinical, molecular, and laboratory data
Who Can Use This Resource
- Physicians and research/medical staff must be part of an Enrolling Institution to access registry.
How To Get Started
- To participate as an Enrolling Institution, the institution must have Institutional Review Board (IRB) approval.
- Once an institution has IRB approval, qualified members at the institution must apply for registry user privileges before gaining access to the USIDNET registry.
- Institutional Review Board