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.
Key Inclusion Criteria
- Must have a primary immune deficiency disease or be a genetic carrier of such a defect.
- Subject must give informed consent or assent.
- 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.
- 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
- 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.
- Individuals who do not give informed consent will also be excluded.