Primary Immunodeficiency (PI) Diseases Registry at USIDNET

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.

More information about this resource is available at Primary Immunodeficiency (PI) Diseases Registry

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

Tools

  • 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.

Oversight

  • Institutional Review Board