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Sickle Africa Data Coordinating Center

镰刀非洲数据协调中心

基本信息

批准号：
10656225
负责人：
Nicola Mulder
金额：
$ 95.6万
依托单位：
UNIVERSITY OF CAPE TOWN
依托单位国家：
美国
项目类别：
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/10656225
关键词：
5 year old Abnormal coordination Adult Africa Africa South of the Sahara African Basic Science Big Data Methods Bioinformatics Birth Caring Cellular Phone 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 Electronics Ensure Environment Ethics Evaluation Framingham Heart Study Ghana Grant Guidelines Health Heart Diseases Hemoglobinopathies Human Subject Research Incidence Income Infant Institution International Intervention Intranet Longevity Longitudinal cohort Maintenance Methods Monitor Neonatal Screening Nigeria Online Systems Ontology Organ 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 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 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

项目摘要

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.

项目概要/摘要（30行）据估计，全世界每年有305，800名婴儿出生时患有镰状细胞病（SCD），其中近 75%的出生率发生在撒哈拉以南非洲（SSA）。尽管发病率很高，但目前还没有有效的撒哈拉以南非洲国家的公共卫生项目主要关注SCD。因此，高达90%的婴儿 SSA的SCD被认为在五岁之前就不必要地死亡。来自高收入国家的证据表明新生儿筛查和青霉素预防等干预措施可以减少撒哈拉以南非洲可预防的SCD死亡。这样的计划被认为可以降低70%的死亡率美国SCD儿童的发病率。然而，美国成人SCD患者的死亡率由于多器官并发症，在过去的30年里没有改善。因此，有一个主要的需要，研究开发有效的治疗方法在整个生命周期的SCD在世界各地。高南亚区域疾病的流行率预计将促进对SCD的研究。在2017年，我们建立了镰刀非洲数据协调中心（SADaCC），以支持镰刀泛非研究联盟（SPARCo）在坦桑尼亚，尼日利亚和加纳的网站。此U24应用程序旨在继续SADaCC活动，以维持、增强和发展SCD 非洲网络，以推进SCD相关的流行病学、转化和临床 research.这一总体目标将通过五个具体目标实现：为SCD SSA网络提供协调和行政支持，包括：进一步发展标准作业程序和网站;目标2：维持和扩大中央镰状血红蛋白病电子数据库，将包括：更新数据采集表和登记册标准操作程序;一个安全和可扩展的数据系统目标3：提供数据管理支持，包括：质量控制数据集;生物标本储存管理系统; 国家特定的人类受试者研究法规。目标4：提供专门知识和支助，研究的实施，包括：规划，设计，执行，分析，报告，出版和传播研究报告。目标5：为整个集团提供有效的 SCD研究网络绩效和影响的参与性里程碑和指标。的 SADaCC团队作为SickleInAfrica协调中心的成功经验预示着它的提供为扩大的SCD研究网络提供可持续的支持。

项目成果

期刊论文数量（106）

专著数量（0）

科研奖励数量（0）

会议论文数量（0）

专利数量（0）

Negotiating political power and stigma around fragile X Syndrome in a rural village in Cameroon: A tale of a royal family and a community.

DOI：
10.1002/mgg3.1615
发表时间：
2021-03
期刊：
Molecular genetics & genomic medicine
影响因子：
2
作者：
Kengne Kamga K;Munung NS;Nguefack S;Wonkam A;De Vries J
通讯作者：
De Vries J

Fine scale human genetic structure in three regions of Cameroon reveals episodic diversifying selection.

DOI：
10.1038/s41598-020-79124-1
发表时间：
2021-01-13
期刊：
Scientific reports
影响因子：
4.6
作者：
Esoh KK;Apinjoh TO;Nyanjom SG;Wonkam A;Chimusa ER;Amenga-Etego L;Amambua-Ngwa A;Achidi EA
通讯作者：
Achidi EA

Social and Epistemic Justice: Are We Really Including Africa in the Bioethics Discourse?