Sickle Africa Data Coordinating Center

点击翻译按钮获取中文摘要

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.