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Diagnosis, management, and monitoring of interleukin-1 mediated diseases in Central and Eastern Europe: real-world data
M. Jelusic, M. Sestan, N. Toplak, C. Tamas, J. Vojinovic, Z. Zuber, B. Wolska-Kusnierz, M. Sparchez, M. Jesenak, S. Rusoniene, V. Stanevica, P. Dolezalova, L. Harel, Y. Uziel, M. Gattorno
Jazyk angličtina Země Anglie, Velká Británie
Typ dokumentu časopisecké články
Grantová podpora
Project ID No 739543
This research received no external funding. The APC is funded by the European Reference Network for Rare Immunodeficiency, Autoinflammatory and Autoimmune Diseases - Project ID No 739543.
NLK
BioMedCentral
od 2007-12-01
BioMedCentral Open Access
od 2007
Directory of Open Access Journals
od 2007
Free Medical Journals
od 2007
PubMed Central
od 2007
Europe PubMed Central
od 2007
ProQuest Central
od 2009-01-01
Open Access Digital Library
od 2007-01-01
Open Access Digital Library
od 2007-01-01
Health & Medicine (ProQuest)
od 2009-01-01
ROAD: Directory of Open Access Scholarly Resources
od 2003
Springer Nature OA/Free Journals
od 2007-12-01
- MeSH
- dědičné zánětlivé autoimunitní nemoci * diagnóza terapie farmakoterapie epidemiologie MeSH
- humanizované monoklonální protilátky MeSH
- interleukin-1 * antagonisté a inhibitory MeSH
- lidé MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- Geografické názvy
- Evropa MeSH
- východní Evropa MeSH
BACKGROUND: Global healthcare disparities, stemming from organizational differences in healthcare systems, lead to variable availability and funding, resulting in a gap between recommended and implemented practices for interleukin (IL)-1-mediated autoinflammatory diseases. We aimed to assess diagnostic, treatment and follow-up options for these diseases in Central and Eastern European countries, comparing them with the 2021 recommendations of the European Alliance of Associations for Rheumatology (EULAR)/American College of Rheumatology (ACR). METHODS: In 2023, a structured collaborative effort was organized with representatives from 10 Central and Eastern European countries to address autoinflammatory diseases. The discussion focused on potential strategies to achieve the goals mentioned above. RESULTS: Almost all the participating countries have specialized centers for the diagnosis and treatment of autoinflammatory diseases and the care is provided either by rheumatologists and/or clinical immunologists. Genetic testing is available in all countries, but there is variation in the types of tests offered. Massive parallel sequencing panels for autoinflammatory diseases are available in all countries, with waiting periods for results ranging from 3 to 6 months in most cases. The availability of disease-specific laboratory assessments, such as S100 proteins, is limited. IL-1 inhibitors are available in all countries, but there are differences in practices regarding the licensing and reimbursement of anakinra and canakinumab based on specific indications or diagnoses. The age at which the transition process begins varies, but in most countries, it typically starts around the age of 18 or beyond and in majority of the participating countries there is no structured transition program. CONCLUSIONS: Adherence to the 2021 EULAR/ACR recommendations for IL-1-mediated autoinflammatory diseases is achievable in Central and Eastern European countries. Determining the prevalence and incidence of these diseases in this region remains a persistent challenge for future research efforts, with the overarching goal of identifying new patients with autoinflammatory diseases.
Department of Immunology Children's Memorial Health Institute Warsaw Poland
Department of Pediatrics Riga Stradins University Riga Latvia
Pediatric Rheumatology Unit Schneider Children's Medical Center of Israel Petach Tikva Israel
Sackler Faculty of Medicine Tel Aviv University Tel Aviv Israel
Unit of Rheumatology and Autoinflammatory Diseases IRCCS Istituto G Gaslini Genova Italy
University of Nis Faculty of Medicine University Clinical Center Clinic of Pediatrics Nis Serbia
Citace poskytuje Crossref.org
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- $a Jelusic, Marija $u Department of Paediatrics, University of Zagreb School of Medicine, Division of Clinical Immunology, Rheumatology and Allergology, Centre of Reference for Paediatric and Adolescent Rheumatology of Ministry of Health of the Republic Croatia, University Hospital Centre Zagreb, Kispaticeva 12, 10 000, Zagreb, Croatia. marija.jelusic@mef.hr $1 https://orcid.org/0000000217284260
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- $a BACKGROUND: Global healthcare disparities, stemming from organizational differences in healthcare systems, lead to variable availability and funding, resulting in a gap between recommended and implemented practices for interleukin (IL)-1-mediated autoinflammatory diseases. We aimed to assess diagnostic, treatment and follow-up options for these diseases in Central and Eastern European countries, comparing them with the 2021 recommendations of the European Alliance of Associations for Rheumatology (EULAR)/American College of Rheumatology (ACR). METHODS: In 2023, a structured collaborative effort was organized with representatives from 10 Central and Eastern European countries to address autoinflammatory diseases. The discussion focused on potential strategies to achieve the goals mentioned above. RESULTS: Almost all the participating countries have specialized centers for the diagnosis and treatment of autoinflammatory diseases and the care is provided either by rheumatologists and/or clinical immunologists. Genetic testing is available in all countries, but there is variation in the types of tests offered. Massive parallel sequencing panels for autoinflammatory diseases are available in all countries, with waiting periods for results ranging from 3 to 6 months in most cases. The availability of disease-specific laboratory assessments, such as S100 proteins, is limited. IL-1 inhibitors are available in all countries, but there are differences in practices regarding the licensing and reimbursement of anakinra and canakinumab based on specific indications or diagnoses. The age at which the transition process begins varies, but in most countries, it typically starts around the age of 18 or beyond and in majority of the participating countries there is no structured transition program. CONCLUSIONS: Adherence to the 2021 EULAR/ACR recommendations for IL-1-mediated autoinflammatory diseases is achievable in Central and Eastern European countries. Determining the prevalence and incidence of these diseases in this region remains a persistent challenge for future research efforts, with the overarching goal of identifying new patients with autoinflammatory diseases.
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