This study is currently recruiting participants.
Number
13-HG-0199
Sponsoring Institute
National Human Genome Research Institute (NHGRI)
Recruitment Detail
Type: Participants currently recruited/enrolled Gender: Male & Female Min Age: 1 mo Max Age: N/A
Referral Letter Required
No
Population Exclusion(s)
None
Keywords
Job Syndrome/HIES; GATA2; Primary Immunodeficiency; SCID; DOCK8; Natural History
Recruitment Keyword(s)
Condition(s)
Primary Immunodeficiencies; APECED; CGD; Wiskott-Aldrich Syndrome; SCID
Investigational Drug(s)
Investigational Device(s)
Intervention(s)
Supporting Site
National Human Genome Research InstituteNational Institute of Allergy and Infectious DiseasesNational Institute of Arthritis and Musculoskeletal and Skin Diseases
- People with primary immune deficiency diseases (PIDD) have weak immune systems. This makes it hard for their bodies to fight infection. The Immune Deficiency Foundation has a network to collect data about people with PIDD. It is called the United States Immunodeficiency Network. It will help doctors and scientists better understand these disorders. The goal is to get medical data for everyone with these disorders in the U.S. and Canada. Data will be stored in a registry. Researchers can use it to study if these disorders are increasing. They can also learn how the disorders are diagnosed and treated.
Objectives:
- To collect data on people with primary immune deficiency disorders.
Eligibility:
- People who have a PIDD.
Design:
- Data can be added with no record of personal identity.
- Data can be added with identity kept separate. This data will be linked to the registry by a code number.
- Data for the registry includes:
- Family history
- Disease treatment
- Disease characteristics
- Medical history
- Laboratory data
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INCLUSION CRITERIA Individuals of all ages, gender, and races with an immunodeficiency disorder from NIH studies will be accepted for registration. No healthy volunteers will be enrolled. 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. Adult individuals who do not give informed consent will also be excluded.
Individuals of all ages, gender, and races with an immunodeficiency disorder from NIH studies will be accepted for registration. No healthy volunteers will be enrolled.
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. Adult individuals who do not give informed consent will also be excluded.
Principal Investigator
Referral Contact
For more information: