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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

Sediva, A
Author Authority ORCID Department of Immunology, 2nd Faculty of Medicine Charles University, Motol University Hospital, Prague, Czech Republic. anna.sediva@fnmotol.cz
Bataneant, M
Author Bataneant, M University of Medicine and Pharmacy "Victor Babes", Timisoara, Romania
Belevtsev, M
Author Belevtsev, M Research Department, Belarusian Center for Pediatric Oncology, Hematology and Immunology, Minsk, Belarus
Blaziene, A
Author Blaziene, A Center of Primary Immunodeficiencies, Vilnius University Hospital Santaros Klinikos, Vilnius, Lithuania
Ciznar, P
Author Ciznar, P Pediatric Department, Children University Hospital in Bratislava, Comenius University in Bratislava, Faculty of Medicine, Bratislava, Slovakia
Förster-Waldl, E
Author Förster-Waldl, E Department of Pediatrics & Adolescent Medicine, Division of Neonatology, Ped. Intensive Care and Neuropediatrics, Center for Congenital Immunodeficiencies, Vienna, Austria
Kelecic, J
Author Kelecic, J Department of Pediatrics, Division of Clinical Immunology, Allergology, Respiratory Diseases and Rheumatology, University Hospital Center Zagreb, Zagreb, Croatia
Marodi, J
Author Marodi, J Primary Immunodeficiency Clinical Unit & Laboratory, Department of Dermatology, Venerology & Dermatooncology, Semmelweis University, Budapest, Hungary
Naumova, E
Author Naumova, E Clinical Immunology & Stem Cell Bank, University Hospital "Aleksandrovska", Sofia, Bulgaria
Nasrullayeva, G
Author Nasrullayeva, G Department of Allergy and Immunology, Azerbaijan Medical University, Baku, Azerbaijan
Ress, K
Author Ress, K Center of Allergology and Immunology, East Tallinn Central Hospital, Tallinn, Estonia
Serban, M
Author Serban, M Clinical Emergency Hospital for Children Louis Turcanu, Timisoara, Romania
Sitkauskiene, B
Author Sitkauskiene, B Department of Immunology and Allergology, Center of Primary Immunodeficiency, Lithuanian University of Health Sciences, Kaunas, Lithuania
Toth, B
Author Toth, B Department of Infectious and Pediatric Immunology, Faculty of Medicine, University of Debrecen, Debrecen, Hungary
Modell, V
Author Modell, V The Jeffrey Modell Foundation, New York, NY, USA
Modell, F
Author Modell, F The Jeffrey Modell Foundation, New York, NY, USA
Tenembaum, V
Author Tenembaum, V The Jeffrey Modell Foundation, New York, NY, USA
Marković, M
Author Marković, M Octapharma Nordic AB, Stockholm, Sweden
Avcin, T
Author Avcin, T Department of Allergology, Rheumatology and Clinical Immunology, University Children's Hospital, University Medical Center Ljubljana, Ljubljana, Slovenia

Immunologic research. 2019 Oct ; 67 (4-5) : 358-367.

Immunol Res
ISSN 1559-0755 | 0257-277X
Source

Language English Country United States Media print

Document type Journal Article, Research Support, Non-U.S. Gov't

Persistent link https://www.medvik.cz/link/pmid31515711

PubMed 31515711
DOI 10.1007/s12026-019-09093-9
PII: 10.1007/s12026-019-09093-9
Knihovny.cz E-resources

Keywords
Awareness, Diagnosis, Education, Jeffrey Modell Centers Network, Jeffrey Modell Foundation, Primary immunodeficiency, Treatment,
MeSH
Humans MeSH
Primary Immunodeficiency Diseases diagnosis epidemiology MeSH
Check Tag
Humans MeSH
Male MeSH
Female MeSH
Publication type
Journal Article MeSH
Research Support, Non-U.S. Gov't MeSH
Geographicals
Europe, Eastern epidemiology MeSH

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.

Center of Allergology and Immunology East Tallinn Central Hospital Tallinn Estonia

Center of Primary Immunodeficiencies Vilnius University Hospital Santaros Klinikos Vilnius Lithuania

Clinical Emergency Hospital for Children Louis Turcanu Timisoara Romania

Clinical Immunology and Stem Cell Bank University Hospital Aleksandrovska Sofia Bulgaria

Department of Allergology Rheumatology and Clinical Immunology University Children's Hospital University Medical Center Ljubljana Ljubljana Slovenia

Department of Allergy and Immunology Azerbaijan Medical University Baku Azerbaijan

Department of Immunology 2nd Faculty of Medicine Charles University Motol University Hospital Prague Czech Republic

Department of Immunology and Allergology Center of Primary Immunodeficiency Lithuanian University of Health Sciences Kaunas Lithuania

Department of Infectious and Pediatric Immunology Faculty of Medicine University of Debrecen Debrecen Hungary

Department of Pediatrics and Adolescent Medicine Division of Neonatology Ped Intensive Care and Neuropediatrics Center for Congenital Immunodeficiencies Vienna Austria

Department of Pediatrics Division of Clinical Immunology Allergology Respiratory Diseases and Rheumatology University Hospital Center Zagreb Zagreb Croatia

Octapharma Nordic AB Stockholm Sweden