Sickle Pan African Research Consortium NigEria (SPARC-NEt)

镰刀泛非研究联盟 NigEria (SPARC-NEt)

• 批准号: 10414923
• 负责人: Obiageli Eunice Nnodu
• 金额: $ 25.26万
• 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/10414923
• 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 Data; 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 Care Research; Health Personnel; Hematology; Hemoglobin concentration result; High Prevalence; Incidence; Individual; Infection; Infrastructure; Intervention; Knowledge; Master' s Degree; 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; Politics; Population; Primary Health Care; Prophylactic treatment; Publications; Quality of life; Research; Research Training; 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; recruit; sickle cell crisis; sickling; skills; standard 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.

尼日利亚是世界上镰状细胞病（SCD）患病率最高的国家，估计有15万婴儿