INCREASING EQUITABLE ACCESS TO UDN IN SOUTH FLORIDA

这项研究的目的是增加公平获得未诊断疾病网络（UDN）在南佛罗里达， 特别是对服务不足和少数群体。对2093名UDN参与者的回顾性研究显示， 与美国人口普查数据相比，西班牙裔/拉丁裔和黑人的代表性不足。认识 需要改善少数群体的包容性，UDN迈阿密临床研究中心致力于加强 从这些社区招募、评估和跟踪个人。具体目标包括积极 从加勒比和中南美洲招募代表性不足的人群，至少招募10名 来自服务不足和少数群体的更多参与者，并进行全面的表型分析， 特征化以改进诊断工作。该研究将利用最先进的医疗设施， 亲自评估，并利用生物储存库和CLIA实验室进行基因组分析。该项目旨在 解决获取和诊断结果方面的差异，从而形成更加多样化和包容性的UDN队列， 改善所有参与者的成果。

This study aims to increase equitable access to the Undiagnosed Diseases Network (UDN) in South Florida, particularly for underserved and minority populations. A retrospective review of 2093 UDN participants revealed an underrepresentation of Hispanic/Latino and black individuals compared to the U.S. Census data. Recognizing the need to improve the inclusion of minority populations, the UDN Miami Clinical Site is committed to enhancing recruitment, evaluation, and follow-up of individuals from these communities. Specific aims include actively recruiting underrepresented populations from the Caribbean and South/Central America, enrolling at least 10 additional participants from underserved and minority groups, and conducting comprehensive phenotypic characterizations to improve diagnostic efforts. The study will utilize state-of-the-art medical facilities, conduct in-person evaluations, and utilize a biorepository and CLIA laboratory for genomic analysis. The project aims to address disparities in access and diagnostic outcomes, leading to a more diverse and inclusive UDN cohort and improved outcomes for all participants.