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.

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
Content last reviewed on November 17, 2017