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Disease Registry
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Primary
Immunodeficiency Diseases Registry at USIDNET
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Purpose, Scope, and
History:
The purpose and scope of this project is to
assemble and maintain a registry of residents of the United States with primary immunodeficiency
diseases. The project was started in 1992 with the "Registry of U.S. Residents with Chronic
Granulomatous Disease". In 1997, this registry was incorporated into the current Registry that
includes the following eight diseases:
- Chronic Granulomatous Disease See
Winkelstein, Marino, Johnston et al., "
Chronic Granulomatous Disease: Report on a
National Registry of 368 Patients
", Medicine, Vol. 79, No.3, May 2000, p.155-69.
- Common Variable Immunodeficiency Disease
- DiGeorge Anomaly
- Hyper IgM Syndrome - See Winkelstein, Marino,
Ochs et al., "
The X-linked
Hyper-IgM Syndrome: Clinical and Immunologic Features of 79 Patients", Medicine, Vol. 82, No. 6, November 2003,
p.373-83.
- Leukocyte Adhesion Defect
- Severe Combined Immunodeficiency Disease
- Wiskott-Aldrich Syndrome
- X-Linked Agammaglobulinemia
The Registry is
now a part of USIDNET. The Registry is currently being expanded to include
over 30 different molecular genetic disorders.
Registration
of Patients:
Physicians submit their patients anonymously.
Deceased as well as living patients maybe included.
Major
Purposes:
- Provide a minimum estimate of the prevalence of
each disorder in the United States.
- Provide a comprehensive clinical picture of each
disorder.
- Provide a resource for clinical and laboratory
research.
Contact and
Access:
Physicians who would like to register their
patients, request a reprint of a publication(s), or investigators who would like to access one or
more of the registries, are encouraged to contact Ann Vukelich, Project Officer at
avukelich@primaryimmune.org
or
(800) 296-4433, Ext 2556. Patients, who would like to be sure that they are
registered, should contact their physicians or email us at
info@usidnet.org
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