Sickle Africa Data Coordinating Center

镰刀非洲数据协调中心

• 批准号: 10175141
• 负责人: Nicola Mulder
• 金额: $ 98.32万
• 依托单位: UNIVERSITY OF CAPE TOWN
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-04-01 至 2026-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10175141
• 关键词: 5 year old; Adult; Africa; Africa South of the Sahara; African; Basic Science; Big Data Methods; Bioinformatics; Birth; Car Phone; Caring; Child; Clinical Research; Cohort Studies; Communication; Country; Data; Data Collection; Data Coordinating Center; Data Element; Data Set; Databases; Death Rate; Development; Disease; Disease Outcome; Effectiveness; Elements; Ensure; Environment; Ethics; Evaluation; Framingham Heart Study; Ghana; Grant; Guidelines; Health; Heart Diseases; Hemoglobinopathies; Human Subject Research; Incidence; Income; Infant; International; Intervention; Intranet; Longevity; Longitudinal cohort; Maintenance; Methods; Monitor; Neonatal Screening; Nigeria; Online Systems; Ontology; Outcome; Patients; Peer Review; Penicillins; Performance; Prevalence; Procedures; Prophylactic treatment; Public Health; Publications; Quality of life; Regional Disease; Registries; Regulation; Reporting; Research; Research Activity; Research Design; Research Support; Research Training; Risk Factors; Secure; Sickle Cell Anemia; Site; Site Visit; Standardization; Support Groups; System; Tablets; Tanzania; Training; Translational Research; Universities; Update; Writing; biomedical informatics; cohort; dashboard; data collection site; data management; data quality; data standards; design; effective therapy; epidemiology study; experience; improved; innovation; meetings; mortality; peer support; preventable death; programs; recruit; repository; research study; sickling; success; web site

Project Summary/Abstract (30 lines) An estimated 305,800 babies are born worldwide each year with Sickle Cell Disease (SCD), with nearly 75% of births in sub-Saharan Africa (SSA). Despite this high incidence, there are currently no effective public health programs in SSA countries focused on SCD. As a consequence, up to 90% of infants with SCD in SSA are believed to die needlessly by five years of age. Evidence from high income countries indicates that interventions such as newborn screening and penicillin prophylaxis can reduce preventable deaths due to SCD in SSA. Such programs are credited with an ~70% reduction in mortality rate among children with SCD in the USA. However, the death rate in adult SCD patients in the USA has not improved in the last thirty years, due to multi-organ complications. There is thus a major need for research to develop effective therapies across the life span for SCD in all parts of the world. High regional disease prevalence in SSA would be expected to facilitate research studies on SCD. In 2017, we established the Sickle Africa Data Coordinating Center (SADaCC) to support the activities of the Sickle Pan African Research Consortium (SPARCo) sites in Tanzania, Nigeria, and Ghana. This U24 application seeks to continue SADaCC activities to sustain, enhance, and grow the SCD Network in Africa, in order to advance SCD-related epidemiological, translational, and clinical research. This overall objective will be accomplished by five specific aims: Aim 1: To provide overall coordination and administrative support to the SCD SSA Network, that will include: the facilitation of interactions and functions, and further development of SOPS and websites; Aim 2: To ensure maintenance and expansion of the centralized electronic sickle hemoglobinopathy database that will include: updating data capture forms and registry SOPs; a secure and scalable system for data collection Aim 3: To provide data management support including: and developing the public-use quality controlled data sets; a repository management system for biospecimens; the enforcement of country-specific human subject research regulations. Aim 4: To provide expertise and support for implementation of research studies, including: planning, design, execution, analysis, reporting, publication, and dissemination of research studies. Aim 5: To provide effective consortium-wide participatory milestones and metrics for the SCD Research Network performance and impact. The SADaCC team’s successful experience as the coordinating center for SickleInAfrica augurs its provision of sustainable support to an expanded SCD Research Network.

项目摘要/摘要（30行） 估计每年有305,800名婴儿出生于镰状细胞病（SCD），几乎 撒哈拉以南非洲（SSA）的分娩75％。尽管发生了这一高事件，但目前却没有效果 SSA国家的公共卫生计划集中在SCD上。结果，多达90％的基础设施 据信，SSA中的SCD在五岁之前不必要地死亡。高收入国家的证据 表明诸如新生儿筛查和预防青霉素等干预措施可以减少 SSA中的SCD导致可预防的死亡。此类计划的死亡率降低了约70％ 美国SCD儿童的率。但是，美国成年SCD患者的死亡率 由于多器官并发症，在过去的三十年中没有改善。因此有主要需求 为了进行研究，可以在世界各地的SCD整个生命周期中开发有效的疗法。高的 预计SSA的区域疾病患病率将促进有关SCD的研究。 2017年， 我们建立了镰状非洲数据协调中心（SADACC），以支持 坦桑尼亚，尼日利亚和加纳的镰刀泛非洲研究财团（SPARCO）地点。 该U24应用程序旨在继续进行SADACC活动，以维持，增强和发展SCD 非洲的网络，以促进与SCD相关的流行病学，翻译和临床 研究。这个总体目标将通过五个特定目标来完成：目标1：提供总体 SCD SSA网络的协调和管理支持，其中包括：设施 互动和功能，以及SOP和网站的进一步发展；目标2：确保 维护和扩展集中式电子镰状血红蛋白病数据库 将包括：更新数据捕获表和注册表SOP；数据的安全可扩展系统 收集目标3：提供数据管理支持，包括：开发公共利用 质量控制的数据集；生物测量的存储库管理系统；执行 国家特定的人类学科研究法规。目标4：为专业知识和支持 研究的实施，包括：计划，设计，执行，分析，报告， 出版和研究研究。目标5：提供有效的财团 SCD研究网络性能和影响的参与里程碑和指标。这 SADACC团队作为镰刀法协调中心的成功经验为其提供 对扩展的SCD研究网络的可持续支持。