Comparative Study of Haitian and Miami Cohorts of Haitian-American and Haitian Immigrant Children with Sickle Cell Disease (CSHSCD)

海地和迈阿密的海地裔美国人和海地移民儿童镰状细胞病 (CSHSCD) 的比较研究

• 批准号: 10652477
• 负责人: Ofelia Amparo Alvarez
• 金额: $ 39.87万
• 依托单位: UNIVERSITY OF MIAMI SCHOOL OF MEDICINE
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-09-01 至 2025-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10652477
• 关键词: 6 year old; Acculturation; Address; Adult; Affect; African American; African American population; African ancestry; Age; American; Anemia; Birth; Black race; Caribbean region; Caring; Categories; Cephalic; Cessation of life; Child; Child Care; Childhood; Chronic Disease; Clinic; Clinical; Cohort Studies; Collaborations; Common Data Element; Comparative Study; Comprehensive Health Care; Conjugate Vaccines; Control Groups; Country; County; Data; Data Reporting; Data Set; Databases; Development; Devices; Disease; Elements; Epidemiology; Ethnic Origin; Florida; Funding Opportunities; Geographic Locations; Growth; Haiti; Haitian; Health; Health Professional; Healthcare; Height; Hemoglobinopathies; Hispanic; Hospitals; Immigrant; Immunization; Incidence; Individual; Infection; Infrastructure; International; Knowledge; Laboratories; Learning; Measures; Methods; Microbiology; Minority; Monitor; Morbidity - disease rate; Neonatal Screening; New York; Newborn Infant; Observational Study; Outcome; Pain; Patients; Penicillins; Persons; PhenX Toolkit; Population; Prevnar; Prophylactic treatment; Public Policy; Quality of Care; Quality of life; Questionnaires; Reading; Registries; Reporting; Research; Resource-limited setting; Resources; Severities; Sickle Cell; Sickle Cell Anemia; Sickle Cell Trait; Site; Streptococcus pneumoniae; Stroke; Subgroup; Testing; Time; Training; Training and Education; Transcranial Doppler Ultrasonography; Ultrasonography; Underserved Population; United States; Universities; Vital Statistics; Weight; barrier to care; biomedical referral center; burden of illness; cohort; comparative; demographics; epidemiologic data; health belief; hydroxyurea; improved; mortality; point of care; programs; prophylactic; screening; screening program; social; standard of care; standardize measure; stroke risk; study population; surveillance study; treatment adherence

Project Summary/Abstract Sickle cell disease (SCD) is a chronic illness which affects mostly minorities in the United States. It is also a prevalent disease in the Caribbean. Children afflicted with SCD are prone to many complications, such as infections, pain and stroke. Newborn screening and comprehensive care with penicillin prophylaxis and immunizations, among other standard-of-care measures, provide the chance to improve quality of life and give the opportunity for survival. Haiti is one of the poorest countries in the Caribbean which does not count with resources at the present time to implement some of these measures. Haitians are a significant minority in South Florida, and are a third of the patients who attend the University of Miami Sickle Cell Clinic. This application presents the opportunity for collaborative research in database development and cohort surveillance studies for newborns and young children less than 6 years of age with SCD in the United States and Haiti. The research question is to what extent there are differences in incidence and health outcomes in the two geographic areas (Miami in Florida and in several Haiti sites). The proposal has 3 specific aims: 1. Determine the incidence of newborns of Haitian ethnicity with SCD in Miami Dade County using available databases from newborn screening. 2. Expand hospital-based newborn screening with point-of-care device and centralized laboratory screening capability in Haiti so that SCD incidence is confirmed, allowing for comparison with Aim 1. 3. Examine and compare barriers to care and health outcomes of the US-based Haitian ethnic cohort (with African-American sickle cell controls) and Haitian cohorts. We will build on previously obtained data that the incidence of SCD in Haiti among newborns is as high as 1 child out of 125 children born has SCD, and will expand the RED Cap database of children followed in Cap Haitien, Haiti. PhenX standardized measures will be used to expand the database for the Miami and Haitian sites. Demographics, changes in height and weight over time (growth), anemia severity, SCD-related complications including stroke risk according to transcranial Doppler ultrasound testing, treatment adherence, barriers to care via questionnaire assessment, acculturation in Haitian immigrants, and mortality will be collected. The implementation of transcranial Doppler ultrasound (TCD), which is a non- invasive method to screen for stroke risk, will be new in Haiti. We will accomplish this with staff training and tele- mentoring. Central reading will be done at the University of Miami. We expect to learn from and benefit a low resource setting in the Caribbean (Haiti), to impact Haitians living in the US, and promote strong international collaboration.

项目概要/摘要 镰状细胞病（SCD）是一种慢性疾病，主要影响美国的少数族裔。它也是一个 加勒比地区流行疾病。患有 SCD 的儿童容易出现许多并发症，例如 感染、疼痛和中风。新生儿筛查和综合护理，包括青霉素预防和 免疫接种以及其他标准护理措施提供了改善生活质量并给予 生存的机会。海地是加勒比海地区最贫穷的国家之一 目前有资源实施其中一些措施。海地人是南部地区的一个重要少数民族 佛罗里达州，是到迈阿密大学镰状细胞诊所就诊的患者的三分之一。这个应用程序 为数据库开发和队列监测研究的合作研究提供了机会 美国和海地患有 SCD 的新生儿和 6 岁以下儿童。研究 问题是两个地理区域的发病率和健康结果存在多大程度的差异 （佛罗里达州迈阿密和海地的几个地点）。该提案有 3 个具体目标： 1. 确定 使用新生儿的可用数据库，了解迈阿密戴德县患有 SCD 的海地裔新生儿 筛选。 2. 通过护理点设备和集中实验室扩大医院新生儿筛查 海地的筛查能力，以便确认 SCD 发病率，以便与目标 1 进行比较。 3. 检查 并比较美国海地族群（与非洲裔美国人）的护理和健康结果障碍 镰状细胞对照）和海地队列。我们将根据之前获得的数据，了解 SCD 的发病率 海地 125 名新生儿中就有 1 名患有 SCD，将扩大 RED 上限 海地海地角儿童数据库。 PhenX标准化措施将用于扩大 迈阿密和海地网站的数据库。人口统计数据、身高和体重随时间的变化（生长）， 贫血严重程度、SCD 相关并发症，包括经颅多普勒超声显示的中风风险 测试、治疗依从性、通过问卷评估进行护理的障碍、海地移民的文化适应、 和死亡率将被收集。经颅多普勒超声（TCD）的实施，这是一种非 筛查中风风险的侵入性方法将在海地成为新方法。我们将通过员工培训和远程培训来实现这一目标 指导。中心阅读将在迈阿密大学进行。我们期望从低水平中学习并受益 加勒比地区（海地）的资源配置，以影响生活在美国的海地人，并促进强大的国际 合作。