Care of patients with inborn errors of immunity in thirty J Project countries between 2004 and 2021

Autor: Hassan Abolhassani, Tadej Avcin, Nerin Bahceciler, Dmitry Balashov, Zsuzsanna Bata, Mihaela Bataneant, Mikhail Belevtsev, Ewa Bernatowska, Judit Bidló, Péter Blazsó, Bertrand Boisson, Mikhail Bolkov, Anastasia Bondarenko, Oksana Boyarchuk, Anna Bundschu, Jean-Laurent Casanova, Liudmyla Chernishova, Peter Ciznar, Ildikó Csürke, Melinda Erdős, Henriette Farkas, Daria S. Fomina, Nermeen Galal, Vera Goda, Sukru Nail Guner, Péter Hauser, Natalya I. Ilyina, Teona Iremadze, Sevan Iritsyan, Vlora Ismaili-Jaha, Milos Jesenak, Jadranka Kelecic, Sevgi Keles, Gerhard Kindle, Irina V. Kondratenko, Larysa Kostyuchenko, Elena Kovzel, Gergely Kriván, Georgina Kuli-Lito, Gábor Kumánovics, Natalja Kurjane, Elena A. Latysheva, Tatiana V. Latysheva, István Lázár, Gasper Markelj, Maja Markovic, László Maródi, Vafa Mammadova, Márta Medvecz, Noémi Miltner, Kristina Mironska, Fred Modell, Vicki Modell, Bernadett Mosdósi, Anna A. Mukhina, Marianna Murdjeva, Györgyi Műzes, Umida Nabieva, Gulnara Nasrullayeva, Elissaveta Naumova, Kálmán Nagy, Beáta Onozó, Bubusaira Orozbekova, Malgorzata Pac, Karaman Pagava, Alexander N. Pampura, Srdjan Pasic, Mery Petrosyan, Gordana Petrovic, Lidija Pocek, Andrei P. Prodeus, Ismail Reisli, Krista Ress, Nima Rezaei, Yulia A. Rodina, Alexander G. Rumyantsev, Svetlana Sciuca, Anna Sediva, Margit Serban, Svetlana Sharapova, Anna Shcherbina, Brigita Sitkauskiene, Irina Snimshchikova, Shqipe Spahiu-Konjusha, Miklós Szolnoky, Gabriella Szűcs, Natasa Toplak, Beáta Tóth, Galina Tsyvkina, Irina Tuzankina, Elena Vlasova, Alla Volokha

Publikováno v: Frontiers in Immunology, Vol 13 (2022)

IntroductionThe J Project (JP) physician education and clinical research collaboration program was started in 2004 and includes by now 32 countries mostly in Eastern and Central Europe (ECE). Until the end of 2021, 344 inborn errors of immunity (IEI)

Externí odkaz: https://doaj.org/article/1e2baf3d28f7485d8e4a9157d356a4b0

Calculation of a Primary Immunodeficiency 'Risk Vital Sign' via Population-Wide Analysis of Claims Data to Aid in Clinical Decision Support

Autor: Nicholas L. Rider, Di Miao, Margaret Dodds, Vicki Modell, Fred Modell, Jessica Quinn, Heidi Schwarzwald, Jordan S. Orange

Publikováno v: Frontiers in Pediatrics, Vol 7 (2019)

Background: Early diagnosis of primary immunodeficiency disease leads to reductions in illness and decreased healthcare costs. Analysis of electronic health record data may allow for identification of persons at risk of host-defense impairments from

Externí odkaz: https://doaj.org/article/9f47c3f101fe4a66b66aa22ee0b66d64

Global systematic review of primary immunodeficiency registries

Autor: Marzieh Tavakol, Waleed Al-Herz, Gholamreza Azizi, Arash Kalantari, Asghar Aghamohammadi, Vicki Modell, Ahmed Aziz Bousfiha, Fred Modell, Monireh Mohsenzadegan, Lennart Hammarström, Hossein Esmaeilzadeh, Hassan Abolhassani, Tooba Momen, Mahnaz Sadeghi-Shabestari, Samaneh Delavari, Laleh Sharifi, Reza Yazdani, Antonio Condino-Neto, Mahsa Sohani, Jessica Quinn, Soheila Aleyasin, Mikko Seppänen, Jordan S. Orange, Zahra Chavoshzadeh, Paniz Shirmast, Roya Sherkat, Kathleen E. Sullivan, Hamid Ahanchian, Farahzad Jabbari-Azad, Seyed Alireza Mahdaviani

Publikováno v: Repositório Institucional da USP (Biblioteca Digital da Produção Intelectual)
Universidade de São Paulo (USP)
instacron:USP

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, fa

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::aee76e520c29033d23373fe1e5881edb
https://doi.org/10.1080/1744666x.2020.1801422

Consensus Middle East and North Africa Registry on Inborn Errors of Immunity

Autor: Salem Al-Tamemi, Amel Hassen, Ismail Reisli, André Mégarbané, Waleed Al-Herz, Fred Modell, Gulnara Nasrullayeva, Ahmet Ozen, Jessica Quinn, Elif Karakoc-Aydiner, Nabila Attal, Safa Baris, Reda Djidjik, Nadia Kechout, Ridha Barbouche, László Maródi, Maryam Ali Al-Nesf, Necil Kutukculer, Samir Ladj, Mehdi Adeli, Khalissa Saidani, Ragheed Rizk, Yacine Ferhani, Sara Sebnem Kilic, Mona Al-Ahmed, Vicki Modell, Hassan Abolhassani, Marwa H. Elnagdy, Kamel Djenouhat, Reda Belbouab, Nima Rezaei, Asghar Aghamohammadi, Rachida Boukari, Samaneh Delavari, Carla Irani, Raif S. Geha, Hulya Kose, Nesrin Gulez, Ali Sobh, Ferah Genel, Cybel Mehawej, Ezgi Topyildiz, Azzeddine Tahiat, Aziz Bousfiha, Reza Yazdani, Brahim Belaid

Publikováno v: Journal of Clinical Immunology

Background Inborn errors of immunity (IEIs) are a heterogeneous group of genetic defects of immunity, which cause high rates of morbidity and mortality mainly among children due to infectious and non-infectious complications. The IEI burden has been

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::02ec7ac8f7a994ec008ac3875869e0cd
https://pubmed.ncbi.nlm.nih.gov/34052995

Global report on primary immunodeficiencies: 2018 update from the Jeffrey Modell Centers Network on disease classification, regional trends, treatment modalities, and physician reported outcomes

Autor: Vicki Modell, Jordan S. Orange, Fred Modell, Jessica Quinn

Publikováno v: Immunologic Research. 66:367-380

Primary immunodeficiencies (PI) are genetic defects of the immune system that result in chronic, serious, and often life-threatening infections, if not diagnosed and treated. Many patients with PI are undiagnosed, underdiagnosed, or misdiagnosed. In

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::6ad5d7be39c9c72ccdea2919d8126bb9
https://doi.org/10.1007/s12026-018-8996-5