Global Systematic Review of Primary Immunodeficiency Registries

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Global Systematic Review of Primary Immunodeficiency Registries Publisher Pubmed

Abolhassani H^{1, 2} ; Azizi G³ ; Sharifi L^{1, 28} ; Yazdani R¹ ; Mohsenzadegan M¹ ; Delavari S^{1, 29} ; Sohani M¹ ; Shirmast P¹ ; Chavoshzadeh Z⁴ ; Mahdaviani SA⁵ ; Kalantari A⁶ ; Tavakol M³ ; Jabbariazad F⁷ ; Ahanchian H⁷ Show All Authors

Abolhassani H^{1, 2}
Azizi G³
Sharifi L^{1, 28}
Yazdani R¹
Mohsenzadegan M¹
Delavari S^{1, 29}
Sohani M¹
Shirmast P¹
Chavoshzadeh Z⁴
Mahdaviani SA⁵
Kalantari A⁶
Tavakol M³
Jabbariazad F⁷
Ahanchian H⁷
Momen T⁸
Sherkat R⁹
Sadeghishabestari M¹⁰
Aleyasin S¹¹
Esmaeilzadeh H¹¹
Alherz W^{12, 13}
Bousfiha AA^{14, 15, 16}
Condinoneto A^{17, 18}
Seppanen M^{19, 20, 21}
Sullivan KE^{22, 23}
Hammarstrom L²
Modell V²⁴
Modell F²⁴
Quinn J²⁴
Orange JS^{24, 25}
Aghamohammadi A^{1, 26, 27}

Show Affiliations

1. Research Center for Immunodeficiencies, Pediatrics Center of Excellence, Children’s Medical Center, Tehran University of Medical Sciences, Tehran, Iran
2. Division of Clinical Immunology, Department of Laboratory Medicine, Karolinska Institute at Karolinska University Hospital Huddinge, Stockholm, Sweden
3. Non-Communicable Diseases Research Center, Alborz University of Medical Sciences, Karaj, Iran
4. Pediatric Infections Research Center, Mofid Children’s Hospital, Shahid Beheshti University of Medical Sciences, Tehran, Iran
5. Pediatric Respiratory Diseases Research Center, National Research Institute of Tuberculosis and Lung Diseases(NRITLD), Shahid Beheshti University of Medical Sciences, Tehran, Iran
6. Department of Immunology and Allergy, Imam Khomeini Hospital, Tehran University of Medical Sciences, Tehran, Iran
7. Allergy Research Center, Mashhad University of Medical Sciences, Mashhad, Iran
8. Department of Allergy and Clinical Immunology, Child Growth and Development Research Center, Research Institute for Primordial Prevention of Non-Communicable Disease, Isfahan University of Medical Sciences, Isfahan, Iran
9. Acquired Immunodeficiency Research Center, Lsfahan University of Medical Sciences, Isfahan, Iran
10. Immunology research center of Tabriz, TB and lung research center of Tabriz, Children Hospital, Tabriz University of Medical Science, Tabriz, Iran
11. Allergy Research Center, Shiraz University of Medical Sciences, Shiraz, Iran
12. Department of Pediatrics, Kuwait University, Kuwait City, Kuwait
13. Allergy and Clinical Immunology Unit, Department of Pediatrics, Al-Sabah Hospital, Kuwait City, Kuwait
14. Laboratoire d’Immunologie Clinique, d’Inflammation Et d’Allergie LICIA, Faculty of Medicine and Pharmacy, Hassan II University, Casablanca, Morocco
15. Clinical Immunology Unit, Casablanca Children’s Hospital, Ibn Rochd Medical School, Hassan II University, Casablanca, Morocco
16. The African Society for Immunodeficiencies (ASID) Registry, United States
17. Department of Immunology, Institute of Biomedical Sciences, University of Sao Paulo, Sao Paulo, Brazil
18. The Latin American Society for Immunodeficiencies (LASID) Registry, United States
19. Adult Immunodeficiency Unit, Infectious Diseases, Inflammation Center, University of Helsinki and Helsinki University Hospital, Helsinki, Finland
20. Rare Disease Center and Pediatric Research Center, Children’s Hospital, University of Helsinki and Helsinki University Hospital, Helsinki, Finland
21. European Society for Immunodeficiencies (ESID) Registry, United States
22. Division of Allergy Immunology, Department of Pediatrics, The Children’s Hospital of Philadelphia, Philadelphia, PA, United States
23. The United States Immunodeficiency Network (USIDNET) Registry, United States
24. Jeffrey Modell Foundation (JMF), New York City, NY, United States
25. Department of Pediatrics, Columbia University College of Physicians and Surgeons, New York, NY, United States
26. Iranian Primary Immunodeficiencies Network (IPIN), Tehran University of Medical Science, Tehran, Iran
27. Asia Pacific Society for Immunodeficiencies (APSID) Registry, United States
28. Uro-Oncology Research Center, Tehran University of Medical Sciences, Tehran, Iran
29. Department of Medical Laboratory Sciences, Faculty of Allied Medical Sciences Iran University of Medical Sciences, Tehran, Iran

Source: Expert Review of Clinical Immunology Published:2020

Abstract

Introduction: During the last 4 decades, registration of patients with primary immunodeficiencies (PID) has played an essential role in different aspects of these diseases worldwide including epidemiological indexes, policymaking, quality controls of care/life, facilitation of genetic studies and clinical trials as well as improving our understanding about the natural history of the disease and the immune system function. However, due to the limitation of sustainable resources supporting these registries, inconsistency in diagnostic criteria and lack of molecular diagnosis as well as difficulties in the documentation and designing any universal platform, the global perspective of these diseases remains unclear. Areas covered: Published and unpublished studies from January 1981 to June 2020 were systematically reviewed on PubMed, Web of Science and Scopus. Additionally, the reference list of all studies was hand-searched for additional studies. This effort identified a total of 104614 registered patients and suggests identification of at least 10590 additional PID patients, mainly from countries located in Asia and Africa. Molecular defects in genes known to cause PID were identified and reported in 13852 (13.2% of all registered) patients. Expert opinion: Although these data suggest some progress in the identification and documentation of PID patients worldwide, achieving the basic requirement for the global PID burden estimation and registration of undiagnosed patients will require more reinforcement of the progress, involving both improved diagnostic facilities and neonatal screening. © 2020 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.

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Style	Citing Format
MLA	Abolhassani H, et al.. "Global Systematic Review of Primary Immunodeficiency Registries." Expert Review of Clinical Immunology, vol. 16, no. 7, 2020, pp. 717-732.
APA	Abolhassani H, Azizi G, Sharifi L, Yazdani R, Mohsenzadegan M, Delavari S, Sohani M, Shirmast P, Chavoshzadeh Z, Mahdaviani SA, Kalantari A, Tavakol M, Jabbariazad F, Ahanchian H, Momen T, Sherkat R, Sadeghishabestari M, Aleyasin S, Esmaeilzadeh H, ... Aghamohammadi A (2020). Global Systematic Review of Primary Immunodeficiency Registries. Expert Review of Clinical Immunology, 16(7), 717-732.
Chicago	Abolhassani H, Azizi G, Sharifi L, Yazdani R, Mohsenzadegan M, Delavari S, Sohani M, et al.. "Global Systematic Review of Primary Immunodeficiency Registries." Expert Review of Clinical Immunology 16, no. 7 (2020): 717-732.
Harvard	Abolhassani H et al. (2020) 'Global Systematic Review of Primary Immunodeficiency Registries', Expert Review of Clinical Immunology, 16(7), pp. 717-732.
Vancouver	Abolhassani H, Azizi G, Sharifi L, Yazdani R, Mohsenzadegan M, Delavari S, et al.. Global Systematic Review of Primary Immunodeficiency Registries. Expert Review of Clinical Immunology. 2020;16(7):717-732.
BibTex	@article{ author = {Abolhassani H and Azizi G and Sharifi L and Yazdani R and Mohsenzadegan M and Delavari S and Sohani M and Shirmast P and Chavoshzadeh Z and Mahdaviani SA and Kalantari A and Tavakol M and Jabbariazad F and Ahanchian H and Momen T and Sherkat R and Sadeghishabestari M and Aleyasin S and Esmaeilzadeh H and Alherz W and Bousfiha AA and Condinoneto A and Seppanen M and Sullivan KE and Hammarstrom L and Modell V and Modell F and Quinn J and Orange JS and Aghamohammadi A}, title = {Global Systematic Review of Primary Immunodeficiency Registries}, journal = {Expert Review of Clinical Immunology}, volume = {16}, number = {7}, pages = {717-732}, year = {2020} }
RIS	TY - JOUR AU - Abolhassani H AU - Azizi G AU - Sharifi L AU - Yazdani R AU - Mohsenzadegan M AU - Delavari S AU - Sohani M AU - Shirmast P AU - Chavoshzadeh Z AU - Mahdaviani SA AU - Kalantari A AU - Tavakol M AU - Jabbariazad F AU - Ahanchian H AU - Momen T AU - Sherkat R AU - Sadeghishabestari M AU - Aleyasin S AU - Esmaeilzadeh H AU - Alherz W AU - Bousfiha AA AU - Condinoneto A AU - Seppanen M AU - Sullivan KE AU - Hammarstrom L AU - Modell V AU - Modell F AU - Quinn J AU - Orange JS AU - Aghamohammadi A TI - Global Systematic Review of Primary Immunodeficiency Registries JO - Expert Review of Clinical Immunology VL - 16 IS - 7 SP - 717 EP - 732 PY - 2020 ER -

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