Management of autoinflammatory diseases: Czech-Slovak adaptation of the SHARE European recommendations*

Česká verzia

Authors: Š. Fingerhutová ¹; T. Dallos ²; K. Bouchalova ³; I. Brejchová ⁴; J. Fráňová ⁵; E. Jančová ⁶; K. Jarošová ⁷; K. Kobrová ⁸; M. Macků ⁵; H. Malcová ⁹; L. Minxová ¹⁰; D. Němcová ¹; M. Schüller ⁵; E. Skalická ¹¹; V. Vargová ¹²; Doležalová P. Pro Pracovní Skupiny Dětské Revmatologie Při Čps ¹; Sps
Authors place of work: Centrum dětské revmatologie a autoinflamatorních onemocnění, Klinika dětského a dorostového lékařství Všeobecné fakultní nemocnice a 1. LF UK, Praha ¹; Detská klinika LF Univerzity Komenského a NÚDCH, Bratislava ²; Dětská klinika LF UP a FN, Olomouc ³; Nemocnice České Budějovice ⁴; Pediatrická klinika LF MU a FN Brno ⁵; Klinika nefrologie Všeobecné fakultní nemocnice a 1. LF UK, Praha ⁶; Revmatologický ústav, Praha ⁷; Dětská klinika Masarykovy nemocnice, Ústí nad Labem ⁸; Oddělení revmatologie dětí a dospělých, Fakultní nemocnice Motol, Praha ⁹; Dětská klinika LF UK a FN, Hradec Králové ¹⁰; Dětská klinika LF UK a FN, Plzeň ¹¹; Klinika detí a dorastu, LF UPJŠ a DFN, Košice ¹²
Published in the journal: Čes-slov Pediat 2018; 73 (4): 209-220.
Category:

*ter Haar NM, et al. Recommendations for the management of autoinflammatory diseases. Ann Rheum Dis 2015; 74: 1636–1644

Summary

This is a translation and adaptation of the original publication with authors’ permission. Autoinflammatory diseases are characterised by fever and systemic inflammation, with potentially serious complications. Owing to the rarity of these diseases, evidence-based guidelines are lacking. In 2012, the European project Single Hub and Access point for paediatric Rheumatology in Europe (SHARE) was launched to optimise and disseminate regimens for the management of children and young adults with rheumatic diseases, facilitating the clinical practice of paediatricians and (paediatric) rheumatologists.

One of the aims of SHARE was to provide evidence-based recommendations for the management of the autoinflammatory diseases: cryopyrin-associated periodic syndromes (CAPS), tumour necrosis factor (TNF) receptor associated periodic syndrome (TRAPS) and mevalonate kinase deficiency (MKD). These recommendations were developed using the European League Against Rheumatism standard operating procedure. An expert committee of paediatric and adult rheumatologists was convened.

Recommendations derived from the systematic literature review were evaluated by an online survey and subsequently discussed at a consensus meeting using Nominal Group Technique. Recommendations were accepted if more than 80% agreement was reached. In total, four overarching principles, 20 recommendations on therapy and 14 recommendations on monitoring were accepted with ≥80% agreement among the experts. Topics included (but were not limited to) validated disease activity scores, therapy and items to assess in monitoring of a patient.

By developing these recommendations, we aim to optimise the management of patients with CAPS, TRAPS and MKD. Original translation was updated and modified according to the Czech and Slovak healthcare specificities.

Key words:

clinical recommendations, autoinflammatory diseases, periodic fever syndrome

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Štítky

Paediatric rheumatology Neonatology Paediatrics General practitioner for children and adolescents Rheumatology

Článek Juvenile idiopatic arthritis associated uveitis

Článek Key note lecture

Článok vyšiel v časopise

Czech-Slovak Pediatrics

2018 Číslo 4

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