Improving Clinical Practice Through Patient Registries in Allergy and Immunology.

Kimberly G Blumenthal, Nicholas L Rider, Christina Chambers, Elizabeth J Phillips, Anna Nowak-Wegrzyn, Andrew Moore, Jennifer Namazy

Journal: The journal of allergy and clinical immunology. In practice 2024;12(10):2599-2609

PMID: 38734373

Abstract

Patient registries are a mechanism for collecting data on allergic and immunologic diseases that provide important information on epidemiology and outcomes that can ultimately improve patient care. Key criteria for establishing effective registries include the use of a clearly defined purpose, identifying the target population and ensuring consistent data collection. Registries in allergic diseases include those for diseases such as inborn errors of immunity (IEI), food allergy, asthma and anaphylaxis, pharmacological interventions in vulnerable populations, and adverse effects of pharmacologic interventions including hypersensitivity reactions to drugs and vaccines. Important insights gained from patient registries in our field include contributions in phenotype and outcomes in IEI, the risk for adverse reactions in food-allergic patients in multiple settings, the benefits and risk of biologic medications for asthma during pregnancy, vaccine safety, and the categorization and genetic determination of risk for severe cutaneous adverse reactions to medications. Impediments to the development of clinically meaningful patient registries include the lack of funding resources for registry establishment and the quality, quantity, and consistency of available data. Despite these drawbacks, high-quality and successful registries are invaluable in informing clinical practice and improving outcomes in patients with allergic and immunological diseases.

Copyright © 2024 American Academy of Allergy, Asthma & Immunology. Published by Elsevier Inc. All rights reserved.

Address: ENTAA Care, Johns Hopkins Regional Physicians, Glen Burnie, Md. Electronic address: [email protected].; Division of Rheumatology, Allergy, and Immunology, Department of Medicine, Massachusetts General Hospital, Boston, Mass; Harvard Medical School, Boston, Mass.; Department of Pediatrics, University of California San Diego, La Jolla, Calif.; Division of Allergy and Immunology, Scripps Clinic, La Jolla, Calif.; Department of Pediatrics, Hassenfeld Children's Hospital, NYU Grossman School of Medicine, New York, NY; Department of Pediatrics, Gastroenterology and Nutrition, Collegium Medicum, University of Warmia and Mazury, Olsztyn, Poland.; Department of Medicine, Center for Drug Safety and Immunology, Vanderbilt University Medical Center, Nashville, Tenn.; Department of Health Systems and Implementation Science, Virginia Tech Carilion School of Medicine, Roanoke, Va; Carilion Clinic, Section of Allergy-Immunology, Roanoke, Va.
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