Objective: To determine the prevalence and spectrum of movement disorders (MDs) in a nationwide Roma population–based screening.

Background: Roma represent one of the least studied ethnic minorities in Europe. Data on the prevalence, clinical spectrum, and genetic background of MDs in this population remain limited.

Method: We conducted a nationwide epidemiological study of MDs among Roma individuals in Slovakia. A dual recruitment strategy was applied. For Roma individuals integrated into the majority population (≈50% of Roma), neurologists, pediatric neurologists, primary care physicians and pediatricians across Slovakia were contacted via mailings and professional events.

For Roma individuals living in segregated communities, a two-step screening approach was implemented. In collaboration with the Ministry of Healthcare organization Healthy Regions, 286 Roma health assistants from 31 regional groups were trained in MD phenomenology and conducted door-to-door screening to identify individuals with possible MD symptoms. Suspected cases underwent detailed clinical phenotyping and blood sampling performed by a national network of movement disorder neurologists, pediatric neurologists, and clinical geneticists.

Results: In the integrated Roma arm, 124 patients were identified (15 parkinsonism-dominant, 44 dystonia-dominant, 3 chorea-dominant, 4 myoclonus-dominant, 15 tremor-dominant, 25 ataxia-dominant, and 16 mixed MDs).

In the marginalized Roma arm, screening was conducted in 282 locations covering 228,150 individuals. A total of 1471 suspected MD cases were identified; 593 declined initial screening and 226 declined further evaluation. Of the remaining 652 individuals, 425 have been clinically examined so far, and MD phenomenology was not confirmed in 207 (48.7%). Confirmed cases included 35 parkinsonism-dominant, 64 dystonia-dominant, 3 chorea-dominant, 5 myoclonus-dominant, 38 tremor-dominant, 24 ataxia-dominant, and 12 mixed MDs. Additionally, 369 unrelated healthy controls and 160 parents of included patients were recruited. The mean participant age was 38.1±21.6 years, and 38% were male.

Conclusion: This study represents the first systematic investigation of MDs in the Roma population. It is establishing a large database of hypokinetic, hyperkinetic, and ataxia cases that will enable future analyses of social, environmental, and genetic factors influencing MD prevalence in Roma communities.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/nation-wide-slovak-epidemiological-study-of-movement-disorders-in-roma-population-protocol-and-initial-results/