Literature DB >> 31515711

Primary immunodeficiencies in Central and Eastern Europe-the power of networking Report on the activity of the Jeffrey Modell Foundation Centers Network in Central and Eastern Europe.

A Sediva1, M Bataneant2, M Belevtsev3, A Blaziene4, P Ciznar5, E Förster-Waldl6, J Kelecic7, J Marodi8, E Naumova9, G Nasrullayeva10, K Ress11, M Serban12, B Sitkauskiene13, B Toth14, V Modell15, F Modell15, V Tenembaum15, M Marković16, T Avcin17.   

Abstract

Jeffrey Modell Foundation centers' network activities in Central and Eastern Europe (JMF CEE) have contributed to the development of care for patients with primary immunodeficiencies. On the data continuously collected from individual centers in participating countries since 2011, we demonstrate a steady improvement in a number of aspects concerning complex care for patients with primary immunodeficiencies. The presented data show an improvement of awareness about these rare diseases across the whole Central and Eastern European region, an increase in newly diagnosed patients as well as genetically confirmed cases, earlier establishment of diagnosis, and improved access to clinical treatment. We also present an active patient involvement that is reflected in the expansion of patient organization centers and their activities. The cooperation within the JMF CEE network has also contributed to greater international exposure of participating centers and further to the gradual development of research activities in the rapidly evolving field of primary immunodeficiencies. The improvement of all important aspects of the complex field of primary immunodeficiencies within the JMF CEE network documents the strength and advantages of the joint and coordinated networking.

Entities:  

Keywords:  Awareness; Diagnosis; Education; Jeffrey Modell Centers Network; Jeffrey Modell Foundation; Primary immunodeficiency; Treatment

Year:  2019        PMID: 31515711     DOI: 10.1007/s12026-019-09093-9

Source DB:  PubMed          Journal:  Immunol Res        ISSN: 0257-277X            Impact factor:   2.829


  8 in total

1.  Primary immunodeficiency diseases: the J Project.

Authors:  László Maródi; Jean-Laurent Casanova
Journal:  Lancet       Date:  2009-06-27       Impact factor: 79.321

2.  Fifteen Years of the J Project.

Authors:  László Maródi
Journal:  J Clin Immunol       Date:  2019-05-17       Impact factor: 8.317

Review 3.  History of primary immunodeficiency diseases.

Authors:  Hans D Ochs; Walter H Hitzig
Journal:  Curr Opin Allergy Clin Immunol       Date:  2012-12

Review 4.  The spread of the J Project.

Authors:  Zsuzsa Horváth; Nima Rezaei; Ismail Reisli; Irina Tuzankina; Nurzhan Otarbayev; Panteley Popandopulo; László Maródi
Journal:  J Clin Immunol       Date:  2013-05-19       Impact factor: 8.317

Review 5.  Historical perspectives in the diagnosis and treatment of primary immune deficiencies.

Authors:  Mark Ballow
Journal:  Clin Rev Allergy Immunol       Date:  2014-04       Impact factor: 8.667

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

Authors:  Vicki Modell; Jordan S Orange; Jessica Quinn; Fred Modell
Journal:  Immunol Res       Date:  2018-06       Impact factor: 2.829

Review 7.  Primary immune deficiencies - principles of care.

Authors:  Helen Chapel; Johan Prevot; Hubert Bobby Gaspar; Teresa Español; Francisco A Bonilla; Leire Solis; Josina Drabwell
Journal:  Front Immunol       Date:  2014-12-15       Impact factor: 7.561

8.  International Union of Immunological Societies: 2017 Primary Immunodeficiency Diseases Committee Report on Inborn Errors of Immunity.

Authors:  Capucine Picard; H Bobby Gaspar; Waleed Al-Herz; Aziz Bousfiha; Jean-Laurent Casanova; Talal Chatila; Yanick J Crow; Charlotte Cunningham-Rundles; Amos Etzioni; Jose Luis Franco; Steven M Holland; Christoph Klein; Tomohiro Morio; Hans D Ochs; Eric Oksenhendler; Jennifer Puck; Mimi L K Tang; Stuart G Tangye; Troy R Torgerson; Kathleen E Sullivan
Journal:  J Clin Immunol       Date:  2017-12-11       Impact factor: 8.317

  8 in total
  1 in total

1.  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

  1 in total

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