논문 목록
4건 · 최신순-
Approach to Myoclonus Dystonia Syndrome: A European Reference Network Survey.
[BACKGROUND] Myoclonus-dystonia syndrome (MDS) is a genetic movement disorder with childhood-onset, most frequently caused by SGCE defects. [OBJECTIVE] To evaluate the diagnostic and treatment strategies in MDS used by experts from the Eur…
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Dystonia management across Europe within ERN-RND: current state and future challenges.
[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 Referenc…
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Development of a patient journey map for people living with cervical dystonia.
[BACKGROUND] Patient journey maps are increasingly used as a tool that enables healthcare providers to refine their service provision to best meet patient needs. We developed a cervical dystonia patient journey map (CDPJM) that describes th…
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Management of rare movement disorders in Europe: outcome of surveys of the European Reference Network for Rare Neurological Diseases.
[BACKGROUND AND PURPOSE] The diagnosis of rare movement disorders is difficult and specific management programmes are not well defined. Thus, in order to capture and assess care needs, the European Reference Network for Rare Neurological Di…