İlk İki Yıllık Gözlemsel Keşif Gerçek Yaşam Klinik Fenotipleme ve Birleşik Arap Emirlikleri'nin Emiratis ve Yurttaş Nüfusunda Parkinson Hastalığının Toplumsal Etki Çalışması 2019-2021: Empark Çalışması

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Abstract Background: phenotypic differences in Parkinson’s Disease (PD) among locals (Emiratis) and Expatriots (Expats) living in United Arab Emirates have not been described and could be important to unravel local aspets of clinical heterogenecity of PD pointing towards genetic and epigenetic variations. Objective: To investigate range and nature of motor and nonmotor clinical presentations of PD and its impact on time to diagnosis, local service provisions, quality of life in Emiratis and Expats in UAE as well as address the presence of current unmet needs on relation to care and aetiopathogenetovty of PD related to possible genetic and epigenetic factors. Methods: a cross-sectional one point in time prospective, observational real-life study of 171 patients recruited from PD and Neurology clinics across United Arab Emirates from 2019-2021. primary outcomes were sociodemographic data, motor and nonmotor symptoms (NMS) including cognition and sleep, and quality of life (QOL) assessments,Results: 171 PD patients (52 Emiratis 119 Expats) were included with mean age (Emiratis 48.5 +/- 13.05, Expats 64.15+/-7.7) and mean disease duration (Emiratis 4.8+/-3.2, Expats 6.08+/-2.7)In the e miratis there was a significant mean delay in initiating treatment after diagnosis (Emiratis 1.2+/0.9, Expats 1.6+/1,1 yrs) while from a clinical phenotyping aspect 25% of Emirati females had a predominant lower limb onset PD. NMS burden was ----and fatigue and sexual dysfunction occur independent of disease duration and disease severity in both Emiratis and Expats however, anxiety contributes to 43% of sexual dysfunction among Emiratis and 41% among Expats. Emotional well-being and Social Stigma aspects of QoL measurements predicted worse QOL in Emiratis while lack of social support impaired QOL in Expats. Awareness for advanced therapies was low and only 25% of Emiratis were aware of deep brain surgery compared to 69% Expats. 2% of Emiratis compared to 32% of Expats for Apomorphine infusion and none (0%) Emiratis were aware of intrajejunal levodopa infusion compared to 13% of expats.Conclusion: Our pilot data suggest clinical phenotypic differencesin presentation of PD in Emiratis popuulation of UAE compared to expats . Worryingly the data also shows delayed treatment initiation as well as widespread lack ot knowledge of advanced therapies in the Emirati poopulation.

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