Literature DB >> 32654688

The Importance of Primary Immune Deficiency Registries: The United States Immunodeficiency Network Registry.

Joao Pedro Lopes1, Charlotte Cunningham-Rundles2.   

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.
Copyright © 2020 Elsevier Inc. All rights reserved.

Entities:  

Keywords:  Common variable immune deficiency; Immunoglobulin replacement; Primary immune deficiency; Registry

Mesh：

Year:  2020        PMID： 32654688      PMCID： PMC8183626          DOI： 10.1016/j.iac.2020.03.002

Source DB:  PubMed          Journal:  Immunol Allergy Clin North Am        ISSN： 0889-8561            Impact factor:   3.479


  57 in total

Review 1.  Primary immunodeficiency: looking backwards, looking forwards.

Authors:  William T Shearer; Charlotte Cunningham-Rundles; Hans D Ochs
Journal:  J Allergy Clin Immunol       Date:  2004-04       Impact factor: 10.793

2.  The spectrum of primary immunodeficiency disorders in Australia.

Authors:  K W Baumgart; W J Britton; A Kemp; M French; D Roberton
Journal:  J Allergy Clin Immunol       Date:  1997-09       Impact factor: 10.793

3.  Autoimmune Cytopenias and Associated Conditions in CVID: a Report From the USIDNET Registry.

Authors:  Elizabeth J Feuille; Niloofar Anooshiravani; Kathleen E Sullivan; Ramsay L Fuleihan; Charlotte Cunningham-Rundles
Journal:  J Clin Immunol       Date:  2017-10-28       Impact factor: 8.317

4.  Lack of Clinical Hypersensitivity to Penicillin Antibiotics in Common Variable Immunodeficiency.

Authors:  Heather Hartman; Karrie Schneider; Mary Hintermeyer; Mary Bausch-Jurken; Ramsay Fuleihan; Kathleen E Sullivan; Charlotte Cunningham-Rundles; Francisco A Bonilla; James Verbsky; John Routes
Journal:  J Clin Immunol       Date:  2016-11-22       Impact factor: 8.317

5.  Primary immunodeficiencies in Switzerland: first report of the national registry in adults and children.

Authors:  O Ryser; A Morell; W H Hitzig
Journal:  J Clin Immunol       Date:  1988-11       Impact factor: 8.317

6.  The French national registry of primary immunodeficiency diseases.

Authors: 
Journal:  Clin Immunol       Date:  2010-05       Impact factor: 3.969

7.  Chronic granulomatous disease. Report on a national registry of 368 patients.

Authors:  J A Winkelstein; M C Marino; R B Johnston; J Boyle; J Curnutte; J I Gallin; H L Malech; S M Holland; H Ochs; P Quie; R H Buckley; C B Foster; S J Chanock; H Dickler
Journal:  Medicine (Baltimore)       Date:  2000-05       Impact factor: 1.889

8.  Increased Incidence of Fatigue in Patients with Primary Immunodeficiency Disorders: Prevalence and Associations Within the US Immunodeficiency Network Registry.

Authors:  Joud Hajjar; Danielle Guffey; Charles G Minard; Jordan S Orange
Journal:  J Clin Immunol       Date:  2017-01-26       Impact factor: 8.317

9.  Subspecialty evaluation of chronically ill hospitalized patients with suspected immune defects.

Authors:  Ami Mehra; Peter Sidi; John Doucette; Lissette Estrella; Helen Rouvelas; Charlotte Cunningham-Rundles
Journal:  Ann Allergy Asthma Immunol       Date:  2007-08       Impact factor: 6.347

10.  Prevalence of Granulomas in Patients With Primary Immunodeficiency Disorders, United States: Data From National Health Care Claims and the US Immunodeficiency Network Registry.

Authors:  Jessica Leung; Kathleen E Sullivan; Ludmila Perelygina; Joseph P Icenogle; Ramsay L Fuleihan; Tatiana M Lanzieri
Journal:  J Clin Immunol       Date:  2018-07-24       Impact factor: 8.317
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  3 in total

1.  Interstitial Lung Disease in Common Variable Immunodeficiency.

Authors:  Joao Pedro Lopes; Hsi-En Ho; Charlotte Cunningham-Rundles
Journal:  Front Immunol       Date:  2021-03-11       Impact factor: 7.561

2.  Inborn Errors of Immunity in Algerian Children and Adults: A Single-Center Experience Over a Period of 13 Years (2008-2021).

Authors:  Brahim Belaid; Lydia Lamara Mahammed; Ouardia Drali; Aida Mohand Oussaid; Nabila Souad Touri; Souhila Melzi; Abdelhak Dehimi; Lylia Meriem Berkani; Fatma Merah; Zineb Larab; Ines Allam; Ouarda Khemici; Sonya Yasmine Kirane; Mounia Boutaba; Reda Belbouab; Hadjira Bekkakcha; Assia Guedouar; Abdelhakim Chelali; Brahim Baamara; Djamila Noui; Hadda Baaziz; Radia Rezak; Sidi Mohamed Azzouz; Malika Aichaoui; Assia Moktefi; Redha Mohamed Benhatchi; Meriem Oussalah; Naila Benaissa; Amel Laredj; Assia Bouchetara; Abdelkader Adria; Brahim Habireche; Noureddine Tounsi; Fella Dahmoun; Rabah Touati; Hamza Boucenna; Fadila Bouferoua; Lynda Sekfali; Nadjet Bouhafs; Rawda Aboura; Sakina Kherra; Yacine Inouri; Saadeddine Dib; Nawel Medouri; Noureddine Khelfaoui; Aicha Redjedal; Amara Zelaci; Samah Yahiaoui; Sihem Medjadj; Tahar Khelifi Touhami; Ahmed Kadi; Fouzia Amireche; Imane Frada; Shahrazed Houasnia; Karima Benarab; Chahynez Boubidi; Yacine Ferhani; Hayet Benalioua; Samia Sokhal; Nadia Benamar; Samira Aggoune; Karima Hadji; Asma Bellouti; Hakim Rahmoune; Nada Boutrid; Kamelia Okka; Assia Ammour; Houssem Saadoune; Malika Amroun; Hayet Belhadj; Amina Ghanem; Hanane Abbaz; Sana Boudrioua; Besma Zebiche; Assia Ayad; Zahra Hamadache; Nassima Ouaras; Nassima Achour; Nadira Bouchair; Houda Boudiaf; Dahila Bekkat-Berkani; Hachemi Maouche; Zahir Bouzrar; Lynda Aissat; Ouardia Ibsaine; Belkacem Bioud; Leila Kedji; Djazia Dahlouk; Manoubia Bensmina; Abdelkarim Radoui; Mimouna Bessahraoui; Nadia Bensaadi; Azzeddine Mekki; Zoulikha Zeroual; Koon-Wing Chan; Daniel Leung; Amar Tebaibia; Soraya Ayoub; Dalila Mekideche; Merzak Gharnaout; Jean Laurent Casanova; Anne Puel; Yu Lung Lau; Nacira Cherif; Samir Ladj; Leila Smati; Rachida Boukari; Nafissa Benhalla; Reda Djidjik
Journal:  Front Immunol       Date:  2022-04-21       Impact factor: 8.786

3.  Primary immunodeficiencies in Bulgaria - achievements and challenges of the PID National Expert Center.

Authors:  Elissaveta Naumova; Spaska Lesichkova; Veneta Milenova; Petya Yankova; Marianna Murdjeva; Snezhina Mihailova
Journal:  Front Immunol       Date:  2022-09-22       Impact factor: 8.786
  3 in total

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