Sickle Pan African Research Consortium Nigeria (SPARC-NEt)

尼日利亚镰刀泛非研究联盟 (SPARC-NEt)

• 批准号: 10634631
• 负责人: Obiageli Eunice Nnodu
• 金额: $ 25.19万
• 依托单位: UNIVERSITY OF ABUJA
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-06-01 至 2026-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10634631
• 关键词: 5 year old; Address; Adopted; Advocacy; Africa; Africa South of the Sahara; African; Anemia; Award; Bioinformatics; Biological; Birth; Caring; Case Report Form; Characteristics; Child; Chronic; Clinical; Clinical Research; Clinical Sciences; Cohort Studies; Collaborations; Country; Data Coordinating Center; Databases; Demographic and Health Surveys; Developed Countries; Disease; Early Diagnosis; Educational Curriculum; Ethics; Event; Fetal Hemoglobin; Frequencies; Funding; Genomic approach; Genomics; Ghana; Goals; Guidelines; Health; Health Personnel; Healthcare; Hematology; Hemoglobin concentration result; High Prevalence; Incidence; Individual; Infection; Infrastructure; Intervention; Knowledge; Master of Science; Medicine; Mendelian disorder; Morbidity - disease rate; National Heart, Lung, and Blood Institute; Neonatal Screening; Newborn Infant; Nigeria; Outcome; Parents; Patient Recruitments; Patients; Peer Review; Penicillins; Phase; Phenotype; Policies; Population; Predisposition; Prophylactic treatment; Publications; Quality of life; Research; Resources; Sampling; Sickle Cell; Sickle Cell Anemia; Site; Societies; Strategic Planning; Structure; Support Groups; Supporting Cell; Supportive care; Tanzania; Technology; Training; Translational Research; United States National Institutes of Health; Universities; Work; burden of illness; clinical phenotype; cohort; data registry; epidemiology study; experience; follow-up; gut microbiome; health management; health training; hydroxyurea; implementation study; improved; mortality; primary health center; recruit; sickle cell crisis; sickling; skills; standard care; standard of care; stroke risk; success; vaso-occlusive crisis; working group; 5 year old; Address; Adopted; Advocacy; Africa; Africa South of the Sahara; African; Anemia; Award; Bioinformatics; Biological; Birth; Caring; Case Report Form; Characteristics; Child; Chronic; Clinical; Clinical Research; Clinical Sciences; Cohort Studies; Collaborations; Country; Data Coordinating Center; Databases; Demographic and Health Surveys; Developed Countries; Disease; Early Diagnosis; Educational Curriculum; Ethics; Event; Fetal Hemoglobin; Frequencies; Funding; Genomic approach; Genomics; Ghana; Goals; Guidelines; Health; Health Personnel; Healthcare; Hematology; Hemoglobin concentration result; High Prevalence; Incidence; Individual; Infection; Infrastructure; Intervention; Knowledge; Master of Science; Medicine; Mendelian disorder; Morbidity - disease rate; National Heart, Lung, and Blood Institute; Neonatal Screening; Newborn Infant; Nigeria; Outcome; Parents; Patient Recruitments; Patients; Peer Review; Penicillins; Phase; Phenotype; Policies; Population; Predisposition; Prophylactic treatment; Publications; Quality of life; Research; Resources; Sampling; Sickle Cell; Sickle Cell Anemia; Site; Societies; Strategic Planning; Structure; Support Groups; Supporting Cell; Supportive care; Tanzania; Technology; Training; Translational Research; United States National Institutes of Health; Universities; Work; burden of illness; clinical phenotype; cohort; data registry; epidemiology study; experience; follow-up; gut microbiome; health management; health training; hydroxyurea; implementation study; improved; mortality; primary health center; recruit; sickle cell crisis; sickling; skills; standard care; standard of care; stroke risk; success; vaso-occlusive crisis; working group

Nigeria has the highest prevalence of sickle cell disease (SCD) in the world with an estimated 150,000 babies born annually. Children with SCD in Africa are particularly susceptible to infections, with about 50%-90% dying before five years of age. This burden can be substantially reduced by early diagnosis and supportive care with penicillin prophylaxis, and hydroxyurea (HU) treatment, especially for those at risk of stroke. However, these interventions are yet to be widely implemented in patients with SCD in Nigeria. The Sickle Pan African Research Consortium (SPARCO), with collaborative sites in Ghana, Nigeria and Tanzania was funded by the NIH/ NHLBI in 2017 to establish the infrastructure for future research in SCD. The SPARCO Site in Nigeria is set up at the Centre of Excellence for Sickle Cell Disease Research &Training, University of Abuja (CESRTA). In the first phase of the award, we established the management structure in relation to the Clinical and Data Coordinating Centres and participated actively in consortium working groups’ activities. We obtained and maintained ethical approvals; established a REDCap database under the guidance of the Sickle Africa Data Coordinating Centre (SADaCC); and successfully recruited 4,687 patients across 19 sites using uniform case report forms in collaboration with the Sickle Cell Support Society of Nigeria. (Figure) We delivered specialized training in research and health care management of SCD to 915 health care workers including those in primary health care centres (PHCs). We developed a curriculum for a Master’s degree in Clinical Research and a Postgraduate Diploma in Bioinformatics to address identified gaps. We analyzed preliminary data from the registry and described the clinical phenotypes of SCD in SPARCO Nigeria cohort and conducted an implementation study on newborn. Building on these successes, we are now aiming to sustain, enhance and grow the SCD Network in Africa in order to advance SCD-related epidemiological, translational and clinical research and policy through the Sickle Pan African Research Consortium NigEria (SPARC-NEt) Cohort Study. Our strategy is to increase the SPARC-Net SCD Cohort to 9,000 by: a) recruiting additional 2,000 individuals and bringing in six additional recruitment sites and b) expanding newborn screening to establish a birth cohort of 1000 SCD patients. We will expand, implement, and evaluate the use of the SPARCO Standards of Care (SoC) guidelines for the follow up and management of patients with SCD in the SPARC-NEt Sites and determine the impact of training of, and engagement with, health workers, parents and support groups on the overall health outcomes for individuals with SCD in Nigeria. Additionally, we described three potential implementation and cohort studies that could be adopted by the consortium including a) assess patient characteristics and incidence of clinical events using SPARCO SoC, b) evaluate the impact of HU utilization on clinical and haematological outcomes in patients within the SPARC-Net cohort, and c) using genomic approaches to investigate the association between changes in gut microbiome, HbF levels and frequency of vaso-occlusive crisis in SPARC-Net SCD birth cohort.

尼日利亚的镰状细胞病（SCD）的患病率最高，估计有15万个婴儿 每年出生。非洲SCD的儿童特别容易感染，大约50％-90％ 五岁之前。早期诊断和支持护理可以大大减少这种烧伤 青霉素预防和羟基脲（HU）治疗，特别是对于有中风风险的人。但是，这些 在尼日利亚的SCD患者中，干预措施尚未广泛实施。镰刀泛非研究 财团（SPARCO），在加纳，尼日利亚和坦桑尼亚的协作网站由NIH/ NHLBI资助 在2017年，建立了SCD未来研究的基础设施。尼日利亚的Sparco网站是在 阿布贾大学（Cesrta）镰状细胞疾病研究与培训卓越中心。在第一个 奖励的阶段，我们建立了与临床和数据协调有关的管理结构 中心并积极参加联盟工作组的活动。我们获得并保持道德 批准；在镰状非洲数据协调中心的指导下建立了一个REDCAP数据库 （SADACC）;并使用统一的病例报告表格成功地招募了4,687名患者 与尼日利亚的镰状细胞支持协会合作。 （图）我们进行了专业培训 SCD的研究和医疗保健管理至915名医护人员，包括初级卫生保健 中心（PHCS）。我们开发了临床研究硕士学位的课程和研究生 生物信息学文凭，以解决确定的差距。我们分析了注册表的初步数据 描述了SPARCO尼日利亚队列中SCD的临床表型并进行了实施研究 关于新生儿。在这些成功的基础上，我们的目标是维持，增强和发展SCD网络 在非洲，以推动与SCD相关的流行病学，翻译和临床研究和政策 尼日利亚（SPARC-NET）队列研究的镰刀泛非洲研究联盟研究。我们的策略是增加 SPARC-NET SCD队列至9,000 招聘部位和b）扩大新生儿筛查以建立1000名SCD患者的出生队列。我们将 扩展，实施和评估SPARCO护理标准（SOC）指南的使用 以及在SPARC-NET站点中SCD患者的管理，并确定培训的影响和 与患有卫生工作者，父母和支持小组的互动 尼日利亚的SCD。此外，我们描述了三项潜在的实施和队列研究 联盟通过的采用，包括a）使用 Sparco Soc，b）评估HU利用对患者临床和血液学结局的影响 SPARC-NET队列以及c）使用基因组方法研究变化之间的关联 SPARC-NET SCD出生队列中的肠道微生物组，HBF水平和频率。