Participation in a Research Registry for Immune Disorders

  • End date
    May 1, 2025
  • participants needed
  • sponsor
    National Human Genome Research Institute (NHGRI)
Updated on 27 November 2021
primary immunodeficiency


  • 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.
  • To collect data on people with primary immune deficiency disorders.
  • People who have a PIDD.
  • 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


The purpose of this protocol is to provide a resource for clinical and laboratory research through enrollment of known immunodeficiency patients into a national registry, the US Immunodeficiency Network (USIDNET). The registry data will expand NIH s and the nation s knowledge base about immune deficiency disorders and genetic mutations that lead to these disorders. Additional registrants from NIH protocols will not only increase the understanding of the molecular basis of these disorders, but also will serve to document and track the incidence and progression of complications.

Objectives and specific aims

The purpose of this proposal is to create a mechanism for depositing NIH data into USIDNET. The patient Registry is designed to obtain longitudinal data on a large number of patients with primary immunodeficiency diseases, and genetic carriers of these defects in order to:

  • Learn more about the phenotypic variations seen in a large number of individual patients with the same rare molecular diagnosis.
  • Determine the natural history of these genetic disorders of immunity and establish genotype-phenotype correlations.
  • Learn effects of various treatment protocols used in these patients over time, including unexpected side effects that may be unique to a particular diagnostic group.
  • To evaluate quality of life using standard tools and correlate these with genotype and treatment history.
  • To promote collaborative research amongst interested investigators by identifying a larger pool of potential research subjects than would be available at their own institutions
  • To identify patients with a specific diagnosis for potential participation in multi-institutional clinical trials designed for diagnosis or therapy or their specific disease.

Condition Wiskott-Aldrich Syndrome, Schmidt's Syndrome, Autoimmune disease, Severe Combined Immunodeficiency, Chronic granulomatous disease, Primary Immunodeficiencies, GATA2, ADA-SCID/SCID All Forms, ADA-SCID/SCID All Forms, ADA-SCID/SCID All Forms, ADA-SCID/SCID All Forms, ADA-SCID/SCID All Forms, ADA-SCID/SCID All Forms, ADA-SCID/SCID All Forms, ADA-SCID/SCID All Forms, ADA-SCID/SCID All Forms, ADA-SCID/SCID All Forms, ADA-SCID/SCID All Forms, chronic granulomatous disease, x-linked, scid
Clinical Study IdentifierNCT01953016
SponsorNational Human Genome Research Institute (NHGRI)
Last Modified on27 November 2021


Yes No Not Sure

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
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
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How to participate?

Step 1 Connect with a study center
What happens next?
  • You can expect the study team to contact you via email or phone in the next few days.
  • Sign up as volunteer to help accelerate the development of new treatments and to get notified about similar trials.

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Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.

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If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

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Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

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