Evidence map›Paper›PMID 31515711›Full record

ArticleImmunologic research2019

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 Sediva, M Bataneant, M Belevtsev, A Blaziene, P Ciznar, E Förster-Waldl, J Kelecic, J Marodi, E Naumova, G Nasrullayeva and 9 more

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Article in Immunologic research, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

4 citing papers in PubMed.

  1. Article
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4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

19 authors.

A SedivaDepartment of Immunology, 2nd Faculty of Medicine Charles University, Motol University Hospital, Prague, Czech Republic. anna.sediva@fnmotol.cz.ORCID 0000-0001-7730-2304
M BataneantUniversity of Medicine and Pharmacy "Victor Babes", Timisoara, Romania.
M BelevtsevResearch Department, Belarusian Center for Pediatric Oncology, Hematology and Immunology, Minsk, Belarus.
A BlazieneCenter of Primary Immunodeficiencies, Vilnius University Hospital Santaros Klinikos, Vilnius, Lithuania.
P CiznarPediatric Department, Children University Hospital in Bratislava, Comenius University in Bratislava, Faculty of Medicine, Bratislava, Slovakia.
E Förster-WaldlDepartment of Pediatrics & Adolescent Medicine, Division of Neonatology, Ped. Intensive Care and Neuropediatrics, Center for Congenital Immunodeficiencies, Vienna, Austria.
J KelecicDepartment of Pediatrics, Division of Clinical Immunology, Allergology, Respiratory Diseases and Rheumatology, University Hospital Center Zagreb, Zagreb, Croatia.
J MarodiPrimary Immunodeficiency Clinical Unit & Laboratory, Department of Dermatology, Venerology & Dermatooncology, Semmelweis University, Budapest, Hungary.
E NaumovaClinical Immunology & Stem Cell Bank, University Hospital "Aleksandrovska", Sofia, Bulgaria.
G NasrullayevaDepartment of Allergy and Immunology, Azerbaijan Medical University, Baku, Azerbaijan.
K RessCenter of Allergology and Immunology, East Tallinn Central Hospital, Tallinn, Estonia.
M SerbanClinical Emergency Hospital for Children Louis Turcanu, Timisoara, Romania.
B SitkauskieneDepartment of Immunology and Allergology, Center of Primary Immunodeficiency, Lithuanian University of Health Sciences, Kaunas, Lithuania.
B TothDepartment of Infectious and Pediatric Immunology, Faculty of Medicine, University of Debrecen, Debrecen, Hungary.
V ModellThe Jeffrey Modell Foundation, New York, NY, USA.
F ModellThe Jeffrey Modell Foundation, New York, NY, USA.
V TenembaumThe Jeffrey Modell Foundation, New York, NY, USA.
M MarkovićOctapharma Nordic AB, Stockholm, Sweden.
T AvcinDepartment of Allergology, Rheumatology and Clinical Immunology, University Children's Hospital, University Medical Center Ljubljana, Ljubljana, Slovenia.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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.

Indexed as

Europe, EasternFemaleHumansMalePrimary Immunodeficiency DiseasesAwarenessDiagnosisEducationJeffrey Modell Centers NetworkJeffrey Modell FoundationPrimary immunodeficiencyTreatment

Identifiers

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.