INCREASING EQUITABLE ACCESS TO UDN IN SOUTH FLORIDA

增加南佛罗里达州 UDN 的公平获取

• 批准号: 10872493
• 负责人: MUSTAFA TEKIN
• 金额: $ 29.12万
• 依托单位: UNIVERSITY OF MIAMI SCHOOL OF MEDICINE
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-09-21 至 2024-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10872493
• 关键词: Address; Administrative Supplement; Adult; Biological; Black Populations; Black race; Caribbean region; Censuses; Central America; Child; Clinic; Clinical; Communities; Cuba; DNA; DNA sequencing; Data; Databases; Diagnosis; Diagnostic; Disease; Dominican Republic; Enrollment; Ensure; Equity; Ethics; Ethnic Population; Evaluation; Florida; Genetic; Genetic study; Genomics; Goals; Haiti; Health system; Hispanic; Hispanic Populations; Individual; Laboratories; Latino; Latino Population; Medical; Methods; Minority Groups; Minority Recruitment; Not Hispanic or Latino; Outcome; Participant; Patients; Persons; Phenotype; Policies; Population; Provider; Puerto Rico; Rare Diseases; Recruitment Activity; Research; Sampling; Secure; Site; South America; Specialist; Underrepresented Populations; Underserved Population; Universities; Variant; Vulnerable Populations; access disparities; biobank; black patient; clinical research site; cohort; comparative; diversity and inclusion; follow-up; genomic data; health disparity; improved; improved outcome; meetings; operation; outreach; racial population; recruit; research clinical testing; success; transcriptome sequencing

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.

这项研究旨在增加南佛罗里达州未诊断疾病网络(UDN)的公平准入， 特别是对服务不足和少数群体而言。对2093名UDN参与者的回顾显示 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 为了改善少数族裔人口的包容性，UDN迈阿密临床网站致力于加强 招募、评估和跟踪这些社区的个人。具体目标包括积极 从加勒比和南美洲/中美洲招募代表性不足的人口，至少招收10人 更多来自弱势群体和少数群体的参与者，并进行全面的表型 改善诊断工作的特征。这项研究将利用最先进的医疗设施，进行 亲自评估，并利用生物库和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，导致UDN队列更加多样化和包容性，并 改善所有参与者的结果。