Racial Disparities in Parkinson Disease- Clinical Phenotype, Management and Genetics

帕金森病的种族差异--临床表型、管理和 遗传学 项目摘要 帕金森病(PD)是一种进行性的、致残的神经疾病。研究 在黑人群体中研究这种疾病的特征是不常见的，有一些 这表明患有帕金森氏症的黑人残疾程度更高，疾病更严重， 与白色PD患者相比，具有不同的临床特征。这些健康差距 可能会影响再生障碍性贫血合并帕金森病的护理质量。这项研究的具体目的 调查1)黑人参与者的帕金森病症状和体征，2)管理 这些受试者的帕金森病，以及3)确定基因-表型的关系。 基于先前的研究，主要的研究假设是患有帕金森氏症的黑人有更多的 严重的运动特征，对他们的生活质量影响更大，治疗选择较少， 与患有帕金森病的白人相比，有不同的遗传变异。目标1调查马达， 400名黑人和200名白人受试者的非运动和生活质量量表 七个不同的美国网站。目标2调查同一参与者的管理情况 包括药物治疗、非药物治疗和手术治疗。作为这一目标的一部分， 将为治疗帕金森病的临床医生制定临床指南，以提高对种族的认识 帕金森病的差异。在与PD基金会的协作下，教育方案编制将 为黑人警局社区开发，以提高自我管理技能并减少 差距。在AIM 3中，与全球帕金森遗传计划的合作将 用来确定黑人参与者的基因-表型关系。这个 本研究的总体目标是调查患有帕金森病的黑人的种族差异 疾病的关键组成部分，然后将研究结果传播到神经科和 有针对性的教育和指导的患者社区。这项研究将产生新的 具有深入描述帕金森病种族差异的科学知识，并将 通过提高对帕金森病临床表型差异的认识来改变临床实践， 患者报告的结果，以及帕金森病的识别和管理。结果也将是 由于认识到疾病表现和治疗方法的不同 黑人患者的管理将改善本地区的医疗保健提供和护理质量 服务不足和研究不足的人口。

Racial Disparities in Parkinson Disease- Clinical Phenotype, Management and Genetics Project Summary Parkinson disease (PD) is a progressive, disabling neurological disorder. Studies investigating the features of the disease in Black populations are uncommon, with some suggesting that Blacks with PD are more disabled, with greater disease severity, and with different clinical features compared to White PD patients. These health disparities are likely to influence the quality of care for AA with PD. The specific aims of this study are to investigate 1) PD symptoms and signs in Black participants, 2) the management of PD in these participants, and 3) to determine genotype-phenotype relationships. Based on prior studies, the main study hypotheses are that Blacks with PD have more severe motor features, greater impact on their quality of life, less therapeutic options, and dissimilar genetic variation compared to Whites with PD. Aim 1 investigates motor, non-motor, and quality of life scales in 400 Black and 200 White participants recruited at seven different US sites. Aim 2 investigates management in the same participants including medication, non-medication and surgical treatments. As part of this Aim, clinical guidelines will be developed for PD treating clinicians to raise awareness of racial disparities in PD. In collaboration with PD foundations, educational programming will be developed for the Black PD community to improve self-management skills and reduce disparities. In Aim 3, a collaboration with the Global Parkinson’s Genetics Program will be utilized to determine genotype-phenotype relationships in the Black participants. The overall goal of this study is to investigate racial disparities in Blacks with PD by studying key components of the disease and then disseminate the findings to the neurologic and patient community with targeted education and guidance. This study will result in new scientific knowledge with in-depth characterization of racial disparities in PD, and will change clinical practice by raising awareness of differences in the PD clinical phenotype, patient-reported outcomes, and PD recognition and management. The results will also impact public health since recognition of differences in disease manifestations and management in Black patients will improve healthcare delivery and quality of care in this underserved and understudied population.