Universität zu Köln

Centen, Liesanne M., Pinter, David, van Egmond, Martje E., Graessner, Holm, Kovacs, Norbert ORCID: 0000-0002-7332-9240, Koy, Anne, Perez-Duenas, Belen, Reinhard, Carola, Tijssen, Marina A. J. and Boesch, Sylvia (2023). Dystonia management across Europe within ERN-RND: current state and future challenges. J. Neurol., 270 (2). S. 797 - 810. HEIDELBERG: SPRINGER HEIDELBERG. ISSN 1432-1459

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Abstract

Background Since the first European-wide evaluation of dystonia management in 2016, several efforts have been made to improve dystonia-care. One of these was the development of the Dystonia Disease Group as a part of the European Reference Network for Rare Neurological Diseases (ERN-RND) that implemented several initiatives based on the recommendations made in 2016. Aim To evaluate the current state of dystonia management across Europe. Methods Twenty-four countries were surveyed via 62 dystonia-experts from 44 ERN-RND-related centers. Results Dystonia-experts for adult patients were available in all surveyed countries. However, almost half of the countries evaluated accessibility as merely 'satisfactory'. Access to genetic and neurophysiological testing was challenging to varying degrees in over half of countries. Main oral medications and botulinum toxin were available in all countries. Deep brain stimulation (DBS) was easily accessible in one-third of the countries. Dystonia research was conducted in 20/24 countries. Trainings on dystonia for general practitioners (GPs) were available in 11/24 countries. However, lack of trainings for other professionals was almost general. For pediatric dystonia, experts and specific training were available in over half of the countries. Conclusions In this overview, we present the current state of dystonia management within ERN-RND. Management has slightly improved since 2016 in several fields, including diagnostics, availability of DBS, and research. The results highlight that future challenges in dystonia management are accessibility of experts, and diagnostic tools and treatments, education on adult and childhood dystonia, and optimization of referral pathways. These findings are important for improving dystonia care across Europe.

Item Type:	Journal Article
Creators:	Creators Email ORCID ORCID Put Code Centen, Liesanne M. UNSPECIFIED UNSPECIFIED UNSPECIFIED Pinter, David UNSPECIFIED UNSPECIFIED UNSPECIFIED van Egmond, Martje E. UNSPECIFIED UNSPECIFIED UNSPECIFIED Graessner, Holm UNSPECIFIED UNSPECIFIED UNSPECIFIED Kovacs, Norbert UNSPECIFIED orcid.org/0000-0002-7332-9240 UNSPECIFIED Koy, Anne UNSPECIFIED UNSPECIFIED UNSPECIFIED Perez-Duenas, Belen UNSPECIFIED UNSPECIFIED UNSPECIFIED Reinhard, Carola UNSPECIFIED UNSPECIFIED UNSPECIFIED Tijssen, Marina A. J. UNSPECIFIED UNSPECIFIED UNSPECIFIED Boesch, Sylvia UNSPECIFIED UNSPECIFIED UNSPECIFIED
URN:	urn:nbn:de:hbz:38-686676
DOI:	10.1007/s00415-022-11412-4
Journal or Publication Title:	J. Neurol.
Volume:	270
Number:	2
Page Range:	S. 797 - 810
Date:	2023
Publisher:	SPRINGER HEIDELBERG
Place of Publication:	HEIDELBERG
ISSN:	1432-1459
Language:	English
Faculty:	Unspecified
Divisions:	Unspecified
Subjects:	no entry
Uncontrolled Keywords:	Keywords Language PREVALENCE Multiple languages Clinical Neurology Multiple languages
URI:	http://kups.ub.uni-koeln.de/id/eprint/68667