The Sickle Pan-African Research Consortium (SPARCO)

镰刀泛非研究联盟 (SPARCO)

• 批准号: 9918963
• 负责人: Julie Makani
• 金额: $ 68.33万
• 依托单位: MUHIMBILI UNIVERSITY/ ALLIED HLTH SCIS
• 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 2021-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9918963
• 关键词: Acute; Address; Affect; Africa; African; Antimalarials; Area; Birth; Cameroon; Cardiovascular system; Caring; Central Africa; Cessation of life; Childhood; Chronic; Clinical; Clinical Trials; Cohort Studies; Collaborations; Collection; Comprehensive Health Care; Confidentiality of Patient Information; Consent; Country; Data; Data Coordinating Center; Databases; Democratic Republic of the Congo; Development; Disease; Disease Management; Enrollment; Ensure; Environmental Risk Factor; Ethics; Failure; Genetic; Geography; Ghana; Goals; Guidelines; Health; Health Personnel; Health Professional; Health Services; Health Services Research; Health care facility; Health education; Health system; Healthcare; Hematology; Hemolysis; Heterogeneity; Human; Human Resources; Individual; Infection; Infection prevention; Infrastructure; International; Interphase; Intervention; Investigation; Knowledge; Laboratories; Legal; Management Information Systems; Manuals; Mendelian disorder; Methodology; Morbidity - disease rate; Neonatal Screening; Neurological outcome; Neurology; Nigeria; Nurses; Online Systems; Ontology; Outcome; PF4 Gene; Paper; Patients; Pneumococcal Infections; Policies; Policy Maker; Portuguese; Prevalence; Preventive; Privatization; Procedures; Prophylactic treatment; Proxy; Public Health; Records; Research; Research Activity; Resources; Science; Scientist; Secure; Severity of illness; Sickle Cell Anemia; Site; Standardization; Streptococcus pneumoniae; Tanzania; Testing; Therapeutic; Training Programs; Ursidae Family; Vision; Work; base; bioinformatics network; cohort; cost effective; data access; data sharing; disease phenotype; disease registry; eHealth; effective intervention; hydroxyurea; implementation research; improved; innovation; malaria infection; mortality; portability; prevent; programs; relational database; sickling; skills; social; socioeconomics; standard of care; standardized care

PROJECT SUMMARY The Sickle Pan-African Consortium (SPARCO) consists of a hub in East Africa (Tanzania) and collaborative consortium sites in West Africa (Ghana, Nigeria) and central Africa (Cameroon, Democratic Republic of Congo) which will expand to form the sickle Pan-African Network involving 20 sites in 15 countries. Background of the project: Over the past 10 years, there have been concerted efforts in Africa to address the burden of SCD. These efforts while commendable have been limited by 4 factors; 1) the absence of a multi- site, well described cohort of SCD 2) failure to deploy consistent standards of care 3) human resource capacity that is limited in number and skills and 4) few programs to explore pertinent research questions to understand SCD in Africa and guide locally-appropriate interventions. All this has been compounded by the absence of collaboration within Africa to address these challenges. Specific aims: SPARCO aims to 1) develop a sickle cell disease (SCD) database 2) establish standards of care, 3) strengthen skills in health and research and 4) plan research. The significance of the proposed research and relevance to public health: The countries that bear the greatest public health burden (prevalence, high mortality and morbidity, absence of effective interventions) of SCD are in Africa. Furthermore, the diversity in Africa will allow scientific research that will increase our understanding of how a monogenic disease can have such heterogeneity. The unique features and innovation of the project: SPARCO brings together clinicians, academicians and scientists from 5 sites with existing SCD programs, with ongoing activities in health, education and/or research, embedded in the local infrastructure. The methodology to be used: SPARCO will establish a SCD database that will form a SCD registry (n= 20,000) which will be embedded/interphase with the institutional health information management system. Standards of care will be determined that are locally-appropriate, based on resources available. Working with existing programs, SPARCO will increase the quantity and quality of skills to ensure that there is a critical mass of healthcare professionals, educators and scientist working in SCD. Finally, we will build on existing research activities to conduct cohort studies (n=2,500) [describing spectrum of disease (hematology, neurology, cardiovascular outcomes); describe spectrum of hemolysis and identify factors associated with/modifying disease. In addition, we will conduct implementation studies, focusing on newborn screening (n=50,000), infection prevention (against malaria and pneumococcal infection n=1,000) and increase the use of Hydroxyurea in a systematic manner (n-2,500). Expected results and description of how your results will affect other research areas: The goal is to reduce the public health burden (mortality and morbidity) of SCD in Africa whilst establishing the capacity for research that will contribute to scientific knowledge to find a cure for SCD. The overall aim is to illustrate that with effective partnerships, significant advances in health and biomedical science can be achieved.

项目摘要 镰刀泛非财团（SPARCO）由东非的一个枢纽（坦桑尼亚）和 西非（加纳，尼日利亚）和中非（喀麦隆，民主党）的合作财团站点 刚果共和国）将扩大以形成镰状泛非网络，该网络涉及15个国家 /地区的20个地点。 该项目的背景：在过去的10年中，非洲一直在努力解决 SCD的负担。值得称赞的努力受到4个因素的限制； 1）缺乏 站点，良好描述的SCD队列2）未能部署一致的护理标准3）人力资源能力 数量和技能受到限制，4）很少有探索相关研究问题的计划 非洲的SCD和指导当地的干预措施。所有这些都因缺乏而变得更加复杂 非洲境内的合作解决这些挑战。具体目的：Sparco的目的是1）发展镰刀 细胞疾病（SCD）数据库2）建立护理标准，3）增强健康和研究技能和4） 计划研究。拟议的研究的意义及其与公共卫生的相关性： 承担最大的公共卫生负担（流行，高死亡率和发病率，缺乏有效 SCD的干预措施在非洲。此外，非洲的多样性将允许科学研究 提高我们对单基因疾病如何具有这种异质性的理解。独特的功能 和该项目的创新：Sparco汇集了来自5个地点的临床医生，院士和科学家 通过现有的SCD计划，随着健康，教育和/或研究的持续活动， 本地基础设施。要使用的方法：SPARCO将建立一个SCD数据库，该数据库将形成SCD 注册表（n = 20,000）将与机构健康信息管理嵌入/中间 系统。将根据可用资源确定当地适合当地的护理标准。 与现有计划合作，Sparco将增加技能的数量和质量，以确保有 在SCD工作的大量医疗保健专业人员，教育工作者和科学家。最后，我们将基础 进行队列研究的现有研究活动（n = 2,500）[描述疾病谱（血液学， 神经病学，心血管结局）；描述溶血的光谱并识别相关的因素 患有/修改疾病。此外，我们将进行实施研究，专注于新生儿筛查 （n = 50,000），预防感染（针对疟疾和肺炎球菌感染n = 1,000），并增加了使用的使用 羟基脲以系统的方式（N-2,500）。预期结果和结果将如何影响 其他研究领域：目标是减轻非洲SCD的公共卫生负担（死亡率和发病率） 同时建立研究能力，这将有助于科学知识找到治疗SCD的方法。 总体目的是说明，通过有效的伙伴关系，健康和生物医学的重大进展 可以实现科学。