Ghana-SPARCO: Ghana Sickle Pan-African Research Consortium

加纳-SPARCO：加纳镰刀泛非研究联盟

• 批准号: 10186856
• 负责人: Solomon Fiifi Ofori-Acquah
• 金额: $ 22.76万
• 依托单位: KWAME NKRUMAH UNIVERSITY/SCIENCE/TECH
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-05-10 至 2026-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10186856
• 关键词: Abnormal Hemoglobins; Acute; Address; Adolescence; Adolescent; Adoption; Adult; Advocacy; Affect; Africa; Africa South of the Sahara; African; Analgesics; Area; Benchmarking; Blood Transfusion; Capital; Caring; Cessation of life; Child; Chronic; Cities; Clinic; Clinical; Coagulation Process; Cohort Studies; Consent; Country; Data; Decision Making; Disease; Disease Management; Endothelium; Enrollment; Erythrocytes; Ethics; Etiology; Event; Future; Genes; Genetic Diseases; Genotype; Ghana; Goals; Government; Grant; Guidelines; Harvest; Health Policy; Healthcare; Hematology; Hemoglobin; Hemolytic Anemia; Hereditary Disease; Hospitals; Hydration status; Impaired cognition; Incidence; Individual; Infection; Infection prevention; Infrastructure; Intervention; Kidney; Kidney Diseases; Laboratories; Longevity; Medical center; Morbidity - disease rate; Neonatal Screening; Neurologic; Nigeria; Online Systems; Ontology; Organ; Outcome; Patient Care; Patients; Penicillins; Pharmaceutical Preparations; Phase; Phenotype; Pneumococcal vaccine; Policies; Prenatal Diagnosis; Prophylactic treatment; Prospective cohort; Proteinuria; Protocols documentation; Quality of life; Recurrence; Registries; Renin-Angiotensin-Aldosterone System; Research; Resources; Sickle Cell; Sickle Cell Anemia; Site; Specimen; Standardization; Stroke; Structure; Syndrome; System; Tanzania; Training; Transfusion; Treatment outcome; Ursidae Family; Vascular Endothelium; Vision; Work; base; care delivery; cell registry; clinical care; cohort; evidence base; feasibility testing; functional status; hydroxyurea; implementation research; implementation strategy; implementation study; improved; mHealth; mortality; neurovascular; oxidant stress; patient registry; point of care testing; preventive intervention; programs; prophylactic; prospective; recruit; research study; screening; screening program; sickling; sociodemographics; statistics; systemic inflammatory response

PROJECT SUMMARY Sickle Cell Disease (SCD) is a recessively inherited disorder characterized by disordered hemoglobin structure, aberrant endothelial interactions, systemic inflammation, oxidant stress, and activation of the coagulation system. These abnormalities underlie a myriad of complications including acute vaso-occlusive syndromes and a multi-system progressive chronic end-organ damage. Sub-Saharan Africa (SSA) bears a disproportionately higher burden with an estimated 15 million of the world’s 25 million SCD individuals; 75% of all babies born with SCD; & mortality rate for children under 5 range between 50%-90%. These include absence of National control programs, dearth of basic facilities to manage patients, absence of systematic screening for SCD, pervasive lack of implementation of evidence-based preventative interventions, cultural misconceptions about the genesis of the disease, and lack of governmental support. By the sheer numbers of patients in Africa, there is a potential for large volumes of clinical information to be harvested though operational research for analyses to inform evidence-based decision-making on healthcare, as well as healthcare policies for SCD on the continent. To this end, the Sickle Pan-African Research Consortium (SPARCo) in 2017 started a registry across multiple sites in three countries: Ghana (an applicant for the current U01 grant), Nigeria, and Tanzania. In the first phase of SPARCO, we established a collaborative site in Kumasi and enrolled 2,915 SCD patients including 1,453 from our Newborn screening program into a registry, and built capacity for future research studies. In this second phase, we have added an in-country Satellite site in the capital city Accra, which has well developed clinical, training and research programs in SCD, to form Ghana-SPARCO. Our overarching goal is to establish a prospective cohort of 6,000 individuals living with SCD across the lifespan with a dual purpose of understanding: 1) the determinants of the protean manifestations of acute and chronic complications of SCD in a resource-limited setting, and 2) to conduct implementation research to address, surmount & integrate the best resource-based standards of clinical care. Our vision is to establish hubs of excellence for research and care for SCD in Ghana. We will work with the Coordinating Center to; (i) establish a harmonized patient registry to, (ii) integrate standards of care for SCD, (iii) conduct cohort studies focusing on an assessment of burden and predictors of neurovascular, renal and infectious complications of SCD across the lifespan & (iv) conduct implementation research studies on newborn screening, retention of adolescence in SCD clinics & develop an implementation strategy for routine integration of preventative interventions for SCD. Achieving these benchmarks will help establish the infrastructure to develop a SCD in SSA Research Network.

项目摘要 镰状细胞病（SCD）是一种遗传遗传疾病，其特征是血红蛋白无序 结构，异常内皮相互作用，全身炎症，氧化应激和激活 凝血系统。这些异常是无数并发症，包括急性血管熟悉 综合征和多系统进行性慢性末期器官损害。撒哈拉以南非洲（SSA）带有 据估计，全球2500万SCD的人中有1500万人燃烧不成比例地燃烧； 75％ 在所有患有SCD的婴儿中； 5岁以下儿童的死亡率在50％-90％之间。这些包括 缺乏国家控制计划，管理患者的基本设施的死亡，缺乏系统 筛选SCD，普遍缺乏实施基于证据的预防干预措施，文化 对疾病起源的误解以及缺乏政府支持。通过纯粹的数字 在非洲的患者中，有可能收获大量临床信息 分析的运营研究，以告知有关医疗保健的循证决策以及 大陆SCD的医疗保健政策。为此，镰状泛非研究联盟 （Sparco）2017年，在三个国家 /地区的多个站点开始了一个注册表：加纳（申请人的申请人 当前的U01 Grant），尼日利亚和坦桑尼亚。在Sparco的第一阶段，我们建立了一个协作网站 在库马西（Kumasi）和2,915名SCD患者中 注册表，并建立了未来研究的能力。在第二阶段，我们添加了一个国内 首都阿克拉（Accra SCD，形成加纳 - 萨克科。我们的总体目标是建立一个预期的人群 在整个生命周期中与SCD一起生活，具有双重理解的目的：1）Protean的决定者 在资源有限的环境中，SCD的急性和慢性并发症的表现，以及2）进行 实施研究以解决，克服和整合基于资源的最佳临床标准 关心。我们的愿景是为加纳的SCD建立卓越的研究和护理枢纽。我们将与 协调中心（i）建立一个统一的患者注册表，以（ii）综合护理标准 SCD，（iii）进行队列研究，重点是评估燃烧和神经血管，肾脏的预测指标 SCD的传染性并发​​症在整个生命周期和（IV）进行实施研究研究研究 新生儿筛查，在SCD诊所和开发中保留青少年筛查的常规策略 SCD预防干预措施的整合。实现这些基准将有助于建立 在SSA研究网络中开发SCD的基础架构。