Diagnosis, management, and monitoring of interleukin-1 mediated diseases in Central and Eastern Europe: real-world data
Abstract 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...
Saved in:
| Main Authors: | , , , , , , , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
BMC
2025-05-01
|
| Series: | Pediatric Rheumatology Online Journal |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12969-025-01105-3 |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1850141419552899072 |
|---|---|
| author | Marija Jelusic Mario Sestan Natasa Toplak Constantin Tamas Jelena Vojinovic Zbigniew Zuber Beata Wolska-Kusnierz Mihaela Sparchez Milos Jesenak Skirmante Rusoniene Valda Stanevica Pavla Dolezalova Liora Harel Yosef Uziel Marco Gattorno |
| author_facet | Marija Jelusic Mario Sestan Natasa Toplak Constantin Tamas Jelena Vojinovic Zbigniew Zuber Beata Wolska-Kusnierz Mihaela Sparchez Milos Jesenak Skirmante Rusoniene Valda Stanevica Pavla Dolezalova Liora Harel Yosef Uziel Marco Gattorno |
| author_sort | Marija Jelusic |
| collection | DOAJ |
| description | Abstract 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. |
| format | Article |
| id | doaj-art-46bb9c35ac8643a19abd1c76bcff4247 |
| institution | OA Journals |
| issn | 1546-0096 |
| language | English |
| publishDate | 2025-05-01 |
| publisher | BMC |
| record_format | Article |
| series | Pediatric Rheumatology Online Journal |
| spelling | doaj-art-46bb9c35ac8643a19abd1c76bcff42472025-08-20T02:29:26ZengBMCPediatric Rheumatology Online Journal1546-00962025-05-012311810.1186/s12969-025-01105-3Diagnosis, management, and monitoring of interleukin-1 mediated diseases in Central and Eastern Europe: real-world dataMarija Jelusic0Mario Sestan1Natasa Toplak2Constantin Tamas3Jelena Vojinovic4Zbigniew Zuber5Beata Wolska-Kusnierz6Mihaela Sparchez7Milos Jesenak8Skirmante Rusoniene9Valda Stanevica10Pavla Dolezalova11Liora Harel12Yosef Uziel13Marco Gattorno14Department 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 ZagrebDepartment 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 ZagrebDepartment of Allergology, Rheumatology and Clinical Immunology, University Children’s Hospital, University Medical Center Ljubljana, Ljubljana, Faculty of MedicineDivision of Pediatric Rheumatology and Immunology, Tuzolto Street Department, Pediatric Center, Semmelweis UniversityUniversity of Nis, Faculty of Medicine, University Clinical Center, Clinic of PediatricsDepartment of Pediatrics and Rheumatology, Andrzej Frycz Modrzewski Krakow University, St. Louis Children HospitalDepartment of Immunology, Children’s Memorial Health InstituteSecond Department of Paediatrics, Iuliu Hatieganu University of Medicine and PharmacyNational Centre for Periodic Fever Syndromes, Department of Pediatrics, Department of Pulmonology and Phthisiology, Department of Allergology and Clinical Immunology, Jessenius Faculty of Medicine, Comenius University in Bratislava, University Teaching Hospital in MartinClinic of Children’s Diseases, Institute of Clinical Medicine, Faculty of Medicine, Vilnius UniversityDepartment of Pediatrics, Riga Stradins UniversityCentre for Paediatric Rheumatology and Autoinflammatory Diseases ERN RITA, 1St Faculty of Medicine, Charles University and General University Hospital in PragueSackler Faculty of Medicine, Tel Aviv UniversityDepartment of Pediatrics, School of Medicine, Pediatric Rheumatology Unit, Meir Medical Center, Kfar Saba, and Tel Aviv UniversityUnit of Rheumatology and Autoinflammatory Diseases, IRCCS Istituto G. GasliniAbstract 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.https://doi.org/10.1186/s12969-025-01105-3Autoinflammatory diseasesInterleukin-1 mediated diseasesDiagnosisTreatmentMonitoringPatient-reported outcomes |
| spellingShingle | Marija Jelusic Mario Sestan Natasa Toplak Constantin Tamas Jelena Vojinovic Zbigniew Zuber Beata Wolska-Kusnierz Mihaela Sparchez Milos Jesenak Skirmante Rusoniene Valda Stanevica Pavla Dolezalova Liora Harel Yosef Uziel Marco Gattorno Diagnosis, management, and monitoring of interleukin-1 mediated diseases in Central and Eastern Europe: real-world data Pediatric Rheumatology Online Journal Autoinflammatory diseases Interleukin-1 mediated diseases Diagnosis Treatment Monitoring Patient-reported outcomes |
| title | Diagnosis, management, and monitoring of interleukin-1 mediated diseases in Central and Eastern Europe: real-world data |
| title_full | Diagnosis, management, and monitoring of interleukin-1 mediated diseases in Central and Eastern Europe: real-world data |
| title_fullStr | Diagnosis, management, and monitoring of interleukin-1 mediated diseases in Central and Eastern Europe: real-world data |
| title_full_unstemmed | Diagnosis, management, and monitoring of interleukin-1 mediated diseases in Central and Eastern Europe: real-world data |
| title_short | Diagnosis, management, and monitoring of interleukin-1 mediated diseases in Central and Eastern Europe: real-world data |
| title_sort | diagnosis management and monitoring of interleukin 1 mediated diseases in central and eastern europe real world data |
| topic | Autoinflammatory diseases Interleukin-1 mediated diseases Diagnosis Treatment Monitoring Patient-reported outcomes |
| url | https://doi.org/10.1186/s12969-025-01105-3 |
| work_keys_str_mv | AT marijajelusic diagnosismanagementandmonitoringofinterleukin1mediateddiseasesincentralandeasterneuroperealworlddata AT mariosestan diagnosismanagementandmonitoringofinterleukin1mediateddiseasesincentralandeasterneuroperealworlddata AT natasatoplak diagnosismanagementandmonitoringofinterleukin1mediateddiseasesincentralandeasterneuroperealworlddata AT constantintamas diagnosismanagementandmonitoringofinterleukin1mediateddiseasesincentralandeasterneuroperealworlddata AT jelenavojinovic diagnosismanagementandmonitoringofinterleukin1mediateddiseasesincentralandeasterneuroperealworlddata AT zbigniewzuber diagnosismanagementandmonitoringofinterleukin1mediateddiseasesincentralandeasterneuroperealworlddata AT beatawolskakusnierz diagnosismanagementandmonitoringofinterleukin1mediateddiseasesincentralandeasterneuroperealworlddata AT mihaelasparchez diagnosismanagementandmonitoringofinterleukin1mediateddiseasesincentralandeasterneuroperealworlddata AT milosjesenak diagnosismanagementandmonitoringofinterleukin1mediateddiseasesincentralandeasterneuroperealworlddata AT skirmanterusoniene diagnosismanagementandmonitoringofinterleukin1mediateddiseasesincentralandeasterneuroperealworlddata AT valdastanevica diagnosismanagementandmonitoringofinterleukin1mediateddiseasesincentralandeasterneuroperealworlddata AT pavladolezalova diagnosismanagementandmonitoringofinterleukin1mediateddiseasesincentralandeasterneuroperealworlddata AT lioraharel diagnosismanagementandmonitoringofinterleukin1mediateddiseasesincentralandeasterneuroperealworlddata AT yosefuziel diagnosismanagementandmonitoringofinterleukin1mediateddiseasesincentralandeasterneuroperealworlddata AT marcogattorno diagnosismanagementandmonitoringofinterleukin1mediateddiseasesincentralandeasterneuroperealworlddata |