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: 10226119
• 负责人: Ofelia Amparo Alvarez
• 金额: $ 54.5万
• 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 2024-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10226119
• 关键词: 6 year old; Acculturation; Address; Adult; Affect; African; African American; Age; American; Anemia; Birth; Caribbean region; Caring; Categories; 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 Analyses; Data Reporting; Data Set; Databases; Development; Devices; Disease; Elements; Epidemiology; Ethnic Origin; Florida; Funding Opportunities; Geographic Locations; Growth; Haiti; Haitian; Head; Health; Health Professional; Healthcare; Height; Hemoglobinopathies; Hispanics; Hospitals; Immigrant; Immunization; Incidence; Individual; Infection; Infrastructure; International; Knowledge; Laboratories; Learning; Measures; Mentors; Methods; Microbiology; Minority; Monitor; Morbidity - disease rate; Neonatal Screening; New York; Newborn Infant; Observational Study; Outcome; Pain; Patients; Penicillins; PhenX Toolkit; Population; Prevnar; Prophylactic treatment; Public Policy; Quality of Care; Quality of life; Questionnaires; Reading; Registries; Reporting; Research; 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; base; biomedical referral center; burden of illness; cohort; comparative; demographics; 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.

项目总结/摘要 镰状细胞病（SCD）是一种慢性疾病，主要影响美国的少数民族。也是一 在加勒比地区流行的疾病。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全面护理，包括青霉素预防， 在其他标准护理措施中，免疫接种提供了改善生活质量的机会， 生存的机会。海地是加勒比地区最贫穷的国家之一， 目前，我们有足够的资源来实施其中一些措施。海地人在南部是一个重要的少数民族。 佛罗里达，是三分之一的病人谁参加迈阿密大学镰状细胞诊所。本申请 为数据库开发和队列监测研究提供了合作研究的机会， 在美国和海地，新生儿和6岁以下的儿童患有SCD。研究 问题是这两个地理区域的发病率和健康结果有多大的差异 （迈阿密、佛罗里达和海地的几个地点）。该提案有三个具体目标：1。确定发生率 使用来自新生儿的可用数据库，对迈阿密戴德县患有SCD的海地族新生儿进行研究 筛选2.扩大医院新生儿筛查，配备护理点设备和集中实验室 在海地建立筛查能力，以确认SCD的发病率，从而能够与目标1进行比较。3.审查 并比较美国海地族裔队列（与非洲裔美国人）的护理障碍和健康结果。 镰状细胞对照）和海地队列。我们将根据先前获得的数据， 海地的新生儿中有125名儿童中有1名患有SCD，并将扩大RED Cap 在海地海地角跟踪的儿童数据库。PhenX标准化措施将用于扩大 迈阿密和海地中心的数据库。人口统计学，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确定的卒中风险 测试，治疗依从性，通过问卷评估的护理障碍，海地移民的文化适应， 并收集死亡率。实施经颅多普勒超声（TCD），这是一个非- 侵入性方法来筛选中风风险，将是新的在海地。我们将通过员工培训和远程- 指导。中心阅读将在迈阿密大学完成。我们希望从低成本的技术中学习和受益， 在加勒比地区（海地）的资源设置，以影响生活在美国的海地人，并促进强有力的国际 协作