1. The Importance of Primary Immune Deficiency Registries: The United States Immunodeficiency Network Registry.
- Author
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Lopes JP and Cunningham-Rundles C
- Subjects
- Animals, Humans, United States, Web Browser, Databases, Factual, Primary Immunodeficiency Diseases diagnosis, Primary Immunodeficiency Diseases epidemiology, Primary Immunodeficiency Diseases etiology, Primary Immunodeficiency Diseases therapy, Registries
- Abstract
The importance of registries is vital for almost every human disease but crucial for rare disorders, where the centralized collection, organization, and quality check of data create a platform from where multiple analyses and scientific advances are possible. In this article, the authors review the creation of the United States Immunodeficiency Network registry, its role, and the numerous scientific achievements generated from the collective effort of many., Competing Interests: Disclosure This work was supported by the National Institutes of Health, AI-101093, AI-086037, AI-48693, and the David S Gottesman Immunology Chair., (Copyright © 2020 Elsevier Inc. All rights reserved.)
- Published
- 2020
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