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：
10402928
负责人：
Solomon Fiifi Ofori-Acquah
金额：
$ 26.53万
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/10402928
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 Resource-limited setting 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 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.

项目概要镰状细胞病 (SCD) 是一种隐性遗传性疾病，其特征是血红蛋白紊乱结构、异常的内皮相互作用、全身炎症、氧化应激和激活这些异常是许多并发症的基础，包括急性血管闭塞。综合症和多系统进行性慢性终末器官损伤。全球 2500 万 SCD 患者中估计有 1500 万人的负担高出 75%；所有出生时患有 SCD 的婴儿的比例；5 岁以下儿童的死亡率在 50%-90% 之间。缺乏国家控制计划、缺乏管理患者的基本设施、缺乏系统的 SCD 筛查、普遍缺乏基于证据的预防干预措施、文化对这种疾病的起源存在误解，并且缺乏政府的支持。通过对非洲患者的调查，有可能收集大量临床信息运筹学分析，为医疗保健方面的循证决策提供信息，以及为此，Sickle 泛非研究联盟制定了针对非洲大陆 SCD 的医疗保健政策。 (SPARCo) 于 2017 年在三个国家的多个地点启动了注册：加纳（SPARCo 的申请人）在 SPARCO 的第一阶段，我们建立了一个合作站点。在库马西，招募了 2,915 名 SCD 患者，其中包括来自我们新生儿筛查项目的 1,453 名患者登记处，并建立未来研究的能力在第二阶段，我们增加了一个国内登记处。位于首都阿克拉的卫星站点，在以下领域拥有完善的临床、培训和研究项目 SCD，成立 Ghana-SPARCO，我们的总体目标是建立一个由 6,000 人组成的前瞻性队列。在整个生命周期中与 SCD 一起生活，具有双重理解目的：1) 多变的决定因素在资源有限的环境中出现 SCD 急性和慢性并发症的表现，以及 2) 进行实施研究，以解决、超越和整合基于最佳资源的临床标准我们的愿景是在加纳建立卓越的 SCD 研究和护理中心。协调中心：(i) 建立统一的患者登记处，(ii) 整合患者的护理标准 SCD，(iii) 进行队列研究，重点评估神经血管、肾脏的负担和预测因素以及整个生命周期中 SCD 的感染性并发症 & (iv) 开展实施研究新生儿筛查、在 SCD 诊所保留青春期并制定常规实施策略整合 SCD 的预防性干预措施将有助于建立 SCD 的预防性干预措施。在 SSA 研究网络中开发 SCD 的基础设施。