Ghana-SPARCO: Ghana Sickle Pan-African Research Consortium

加纳-SPARCO：加纳镰刀泛非研究联盟

基本信息

批准号：
10625460
负责人：
Solomon Fiifi Ofori-Acquah
金额：
$ 26.86万
依托单位：
KWAME NKRUMAH UNIVERSITY/SCIENCE/TECH
依托单位国家：
美国
项目类别：
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/10625460
关键词：
Abnormal Hemoglobins Acute Address Adolescence Adolescent Adoption Adult Advocacy Affect Africa Africa South of the Sahara African Agreement Analgesics Area Benchmarking Blood Transfusion Capital Caring Cephalic Cessation of life Child Chronic Cities Clinic Clinical Coagulation Process Cohort Studies Consent Country Data Decision Making Disease Disease Management Electronics Endothelium Enrollment Erythrocytes Ethics Etiology Event Future Genes Genetic Diseases Genotype Ghana Goals 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 Managed Care 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 Recommendation Recurrence Registries Renin-Angiotensin-Aldosterone System Research Resource-limited setting Resources Sickle Cell Sickle Cell Anemia Site Standardization Stroke Structure Syndrome System Tanzania Training Transfusion Vascular Endothelium Vision Work care delivery cell registry clinical care cohort evidence base feasibility testing functional status hydroxyurea implementation facilitators 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

项目摘要

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。

项目成果

期刊论文数量（2）

专著数量（0）

科研奖励数量（0）

会议论文数量（0）

专利数量（0）

Penicillin V prophylaxis uptake among children living with sickle cell disease in a specialist sickle cell clinic in Ghana: A cross-sectional study.

DOI：
10.1002/hsr2.953
发表时间：
2022-11
期刊：
Health science reports
影响因子：
2
作者：
通讯作者：

Iron stores in steady-state sickle cell disease children accessing care at a sickle cell disease clinic in Kumasi, Ghana: A cross-sectional study.

DOI：
10.1002/hsr2.934
发表时间：
2022-11
期刊：
HEALTH SCIENCE REPORTS
影响因子：
2
作者：
Amanor, Ernest;Kwarteng, Alexander;Larbi, Amma;Fordjour, Fatima Amponsah;Koranteng, Kelvin Kwaku;Sackey, David Sebbie;Bannor, Emmanuel;Osei, Francis Adjei;Mohammed, Aliyu;Ackah, Ezekiel Bonwin;Odoom, Samuel Frimpong;Nguah, Samuel Blay;Paintsil, Vivian;Osei-Akoto, Alex
通讯作者：
Osei-Akoto, Alex