Dystonia management across Europe within ERN-RND: current state and future challenges.

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 ch

SUBMITTER: Centen LM 

PROVIDER: S-EPMC9540051 | biostudies-literature | 2022 Oct

REPOSITORIES: biostudies-literature