ArticleEuropean journal of neurology2020
Management of rare movement disorders in Europe: outcome of surveys of the European Reference Network for Rare Neurological Diseases.
Article in European journal of neurology, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 1 of them a synthesis that pooled it.
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Who cites it
12 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Person-centred integrated care for people living with Parkinson's, Huntington's and Multiple Sclerosis: A systematic review.Health expectations : an international journal of public participation in health care and health policy · 2024Pooled it
- Co-Design of a New Integrated Care Model With People Affected by Huntington's Disease: A Mixed Methods Study.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- The organizational dimension in rare and complex diseases care management: an application of RarERN PathBMC health services research · 2025Article
- Diet and Nutrients in Rare Neurological Disorders: Biological, Biochemical, and Pathophysiological Evidence.Nutrients · 2024Review
- Current management of primary mitochondrial disorders in EU countries: the European Reference Networks survey.Journal of neurology · 2024Article
- Physicians' use and perceptions of genetic testing for rare diseases in China: a nationwide cross-sectional study.Orphanet journal of rare diseases · 2023Article
- The Experience of a Tertiary Reference Hospital in the Study of Rare Neurological Diseases.Medicina (Kaunas, Lithuania) · 2023Article
- Literature Review on Health Emigration in Rare Diseases-A Machine Learning Perspective.International journal of environmental research and public health · 2023Review
- Potential clinical and economic benefits of remote deep brain stimulation programming.Scientific reports · 2022Article
- How to approach a neurogenetics diagnosis in different European countries: The European Academy of Neurology Neurogenetics Panel survey.European journal of neurology · 2022Article
- Development of a patient journey map for people living with cervical dystonia.Orphanet journal of rare diseases · 2022Article
- The European Reference Network for Rare Neurological Diseases.Frontiers in neurology · 2020Review
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Authors and funding
11 authors.
Funding
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Abstract
background and purposeThe 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.
methodsThis 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.
resultsSome 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.
conclusionsThe 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.
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