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A Registry of Patients with Primary Immunodeficiency Disorders


Status Enrolling

Condition Primary Immunodeficiency Disorders


Registry of health information, tests, and treatments of those patients with primary immunodeficiency disorders


To build a national registry of data from subjects with primary immune deficiency disease. 

Phase Registry

Key Inclusion Criteria

  1. Must have a primary immune deficiency disease or be a genetic carrier of such a defect.
  2. Subject must give informed consent or assent.
  3. All individuals or all ages and genders with an immunodeficiency disorder will be accepted for registration providing that there is evidence consistent with the diagnosis of a primary immunodeficiency disorder.
  4. The initial Registry was established with 8 disease specific sub-Registries, but the intention is to broaden the number and scope of sub-Registries to include as many of the recognized primary immunodeficiency disorders as possible. We are also developing a data entry format that will permit registration of individuals that meet the usual criteria for a defect in immunity but who do not fit into one of the previously described immunodeficiency disease groups or a genetic carrier of such a defect.

Key Exclusion Criteria

  1. Individuals with immunodeficiency associated with HIV infection, chemotherapy or other immunosuppressive therapies will not be accepted for registration unless there is clear evidence that these individuals also have a genetically determined immunodeficiency disease as well.
  2. Individuals who do not give informed consent will also be excluded. Identifier


IRB Protocol Number
Principal Investigator(s)
Fatima Khan, MD

Clinical Trial Categories

  • Immunodeficiency
Immune Deficiency Foundation
Renee Hendrickson, RN CCRC at 701-780-1694