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

帕金森病的种族差异-临床表型、治疗和预后 遗传学 项目摘要 帕金森病（PD）是一种进行性致残性神经系统疾病。研究 调查黑人人群中疾病的特征并不常见， 这表明患有PD的黑人残疾程度更高，疾病严重程度更高， 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AA伴PD的护理质量。本研究的具体目的 调查1）黑人参与者的PD症状和体征，2）管理 这些参与者中PD的发生率，以及3）确定基因型-表型关系。 基于以往的研究，主要的研究假设是，黑人PD患者的 严重的运动功能，对生活质量的影响更大，治疗选择更少， 和不同的遗传变异相比，白人与PD。目标1研究电机， 非运动和生活质量量表在400名黑人和200名白色参与者中招募， 七个不同的美国网站。目标2调查相同参与者的管理 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PD治疗临床医生制定临床指南，以提高对种族歧视的认识。 PD的差异。与PD基金会合作，教育规划将 为黑人PD社区开发，以提高自我管理技能， 差距。在目标3中，与全球帕金森遗传学计划的合作将 用于确定黑人参与者的基因型-表型关系。的 本研究的总体目标是调查黑人PD患者的种族差异， 疾病的关键组成部分，然后将发现传播到神经系统， 有针对性的教育和指导患者社区。这项研究将导致新的 科学知识，深入描述PD的种族差异，并将 通过提高对PD临床表型差异的认识来改变临床实践， 患者报告的结局以及PD识别和管理。结果也将 自认识到疾病表现的差异以来， 黑人患者的管理将改善医疗服务和护理质量， 服务不足和研究不足的人群。

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.