Management of rare movement disorders in Europe
| العنوان: | Management of rare movement disorders in Europe |
|---|---|
| المؤلفون: | C. Painous, Holm Graessner, N.J.H. van Os, Marina A. J. Tijssen, Wassilios G. Meissner, B.P.C. van de Warrenburg, Anna Delamarre, I. Michailoviene, María-José Martí, Carola Reinhard, Algirdas Utkus |
| المساهمون: | Movement Disorder (MD) |
| المصدر: | European Journal of Neurology, 27(8), 1493-1500. Wiley European journal of neurology, Hoboken : Wiley, 2020, first published online, p. [1-8] European Journal of Neurology, 27, 8, pp. 1493-1500 European Journal of Neurology, 27, 1493-1500 European journal of neurology, Hoboken : Wiley, 2020, vol. 27, iss. 8, p. 1493-1500 European Journal of Neurology |
| بيانات النشر: | Wiley, 2020. |
| سنة النشر: | 2020 |
| مصطلحات موضوعية: | medicine.medical_specialty, Movement disorders, Neurodegeneration with brain iron accumulation, Disease, 03 medical and health sciences, 0302 clinical medicine, Central Nervous System Diseases, Surveys and Questionnaires, Humans, Medicine, media_common.cataloged_instance, survey, European Union, 030212 general & internal medicine, Disease management (health), European union, Genetic testing, media_common, Dystonia, disease management, Europe, movement disorders, rare diseases, medicine.diagnostic_test, business.industry, Paroxysmal dyskinesia, Disorders of movement Donders Center for Medical Neuroscience [Radboudumc 3], medicine.disease, Europe, Cross-Sectional Studies, Neurology, Dystonic Disorders, Family medicine, movement disorders, Original Article, Neurology (clinical), medicine.symptom, business, 030217 neurology & neurosurgery |
| الوصف: | Contains fulltext : 225128.pdf (Publisher’s version ) (Open Access) 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 Diseases has performed an explorative care need survey across all European Union (EU) countries. METHODS: This is a multicentre, cross-sectional study. A survey about the management of different rare movement disorders (group 1, dystonia, paroxysmal dyskinesia and neurodegeneration with brain iron accumulation; group 2, ataxias and hereditary spastic paraparesis; group 3, atypical parkinsonism; group 4, choreas) was sent to an expert in each group of disorders from each EU country. RESULTS: Some EU countries claimed for an increase of teaching courses. Genetic testing was not readily available in a significant number of countries. Regarding management, patients' accessibility to tertiary hospitals, to experts and to multidisciplinary teams was unequal between countries and groups of diseases. The availability of therapeutic options, such as botulinum toxin or more invasive treatments like deep brain stimulation, was limited in some countries. CONCLUSIONS: The management of these conditions in EU countries is unequal. The survey provides evidence that a European care-focused network that is able to address the unmet rare neurological disease care needs and inequalities is highly warranted. |
| وصف الملف: | application/pdf |
| اللغة: | English |
| تدمد: | 1351-5101 1468-1331 |
| الوصول الحر: | https://explore.openaire.eu/search/publication?articleId=doi_dedup___::5a7183394d29aa78a710987fe66dcc9aTest https://doi.org/10.1111/ene.14302Test |
| حقوق: | OPEN |
| رقم الانضمام: | edsair.doi.dedup.....5a7183394d29aa78a710987fe66dcc9a |
| قاعدة البيانات: | OpenAIRE |
| تدمد: | 13515101 14681331 |
|---|