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: 10002268
• 负责人: Ofelia Amparo Alvarez
• 金额: $ 55.19万
• 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/10002268
• 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; 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; 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.

项目摘要/摘要 镰状细胞病（SCD）是一种慢性疾病，主要影响美国的少数民族。这也是一个 加勒比海流行疾病。患有SCD的儿童容易发生许多并发症，例如 感染，疼痛和中风。新生儿筛查和青霉素预防和综合护理 免疫措施除其他护理标准措施外，还提供了改善生活质量并提供的机会 生存的机会。海地是加勒比地区最贫穷的国家之一，不算 目前的资源以实施其中一些措施。海地人在南方是少数 佛罗里达州，是就读迈阿密镰状细胞诊所的患者中的三分之一。此应用程序 为数据库开发和队列监视研究提供了合作研究的机会 在美国和海地，新生儿和幼儿与SCD不到6岁。研究 问题是两个地理区域的发病率和健康结果在多大程度上存在差异 （迈阿密在佛罗里达州和多个海地地点）。该提案具有3个具体目标：1。确定的发生率 新生儿在迈阿密达德县与SCD的新生儿使用新生儿的可用数据库 筛选。 2。扩大基于医院的新生儿筛查，并通过护理设备和集中实验室 海地的筛查能力，以确认SCD发病率，从而与AIM1。3进行比较。 并比较总部位于美国的海地民族队列的护理和健康成果的障碍（与非裔美国人 镰状细胞控制）和海地队列。我们将基于先前获得的SCD发病率的数据 新生儿中的海地高达125个孩子中的1个孩子，有SCD，并将扩大红帽 海地海地帽的儿童数据库。苯二标准化措施将用于扩展 迈阿密和海地网站的数据库。人口统计学，身高和体重随时间变化（增长）， 贫血严重程度，与SCD相关的并发症，包括经颅多普勒超声 测试，治疗依从性，通过问卷调查，海地移民的适应性护理障碍， 并将收集死亡率。实施经颅多普勒超声（TCD），这是一种非 - 筛查中风风险的侵入性方法将是海地的新方法。我们将通过员工培训和电信来实现这一目标 指导。中央阅读将在迈阿密大学完成。我们希望从中学习并受益 加勒比海（海地）的资源设定，影响居住在美国的海地人，并促进强大的国际 合作。