Sickle Pan-African Research Consortium (SPARCO)- Tanzania

Sickle 泛非研究联盟 (SPARCO) - 坦桑尼亚

基本信息

批准号：
10404083
负责人：
EMMANUEL BALANDYA
金额：
$ 26.93万
依托单位：
MUHIMBILI UNIVERSITY/ ALLIED HLTH SCIS
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：
2021-05-15 至 2026-04-30
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10404083
关键词：
APOL1 gene Address Adoption Advocacy Affect Africa Africa South of the Sahara African Age American Society of Hematology Americas Area Birth Caring Cells Clinic Clinical Clinical Management Clinical Research Cohort Studies Collaborations Collection Communication Comprehensive Health Care Consent Country Creatinine Custom Data Data Analyses Data Coordinating Center Databases Development Disease Disease Management District Hospitals Doctor of Philosophy Educational process of instructing Effectiveness Effectiveness of Interventions Elements Enrollment Essential Drugs Event Failure Fellowship Fellowship Program Fetal Hemoglobin Fetal Kidney Funding Genetic Ghana Goals Grant Growth Guidelines HIV/TB Haplotypes Health Health Care Research Health Personnel Health system Hematology Home Hospital Information Systems Hospitals Human Resources Immunization Individual Infection International Intervention Investigation Laboratories Link Malaria Mendelian disorder Morbidity - disease rate National Heart, Lung, and Blood Institute Neonatal Screening Newborn Infant Nigeria Ontology Organ Patients Phenotype Policies Prophylactic treatment Proteins Pyrimethamine Readiness Recommendation Reporting Research Research Personnel Research Training Serum Sickle Cell Anemia Site Societies Structure Students Tanzania Therapeutic Intervention Training Training Programs Translations United States National Institutes of Health Urine Variant Visit Work Zanzibar authority big data management clinical care cohort data infrastructure design disorder risk effective intervention electronic data evidence base experience follow-up genetic variant hydroxyurea immune activation implementation research improved kidney dysfunction meetings member mortality operation preventive intervention programs scale up screening screening program shared database sickling skills success tertiary care treatment program

项目摘要

PROJECT SUMMARY The burden of sickle cell disease (SCD) is highest in sub-Saharan Africa (SSA) where over 75% of patients currently reside. Tanzania is one of the countries most affected by the disease with an estimated 11,000 births a year, the 5th highest in the world. Major challenges in addressing the burden of SCD in SSA have been the lack of multi-site, well described cohorts of SCD patients; failure to deploy consistent standards of care; human resource capacity that is limited in number and skills and limited research in areas pertinent to SCD in the African context. In 2017 three SSA countries, Tanzania, Ghana and Nigeria, teamed up to establish the Sickle Pan-African Research Consortium (SPARCO) to address these challenges. Building on successes achieved to date, SPARCO-Tanzania aims to expand as the Center of Excellence in Training and Research in SCD with the long term goal to advance the care for SCD and contribute to the consortium in generating evidence that will inform the deployment of effective interventions in SSA. Specifically, SPARCO-Tanzania aims to 1) Enhance communication and collaboration with members of the SCD in SSA Network to engage in continent-wide research and create a “Policy Translation Group” that will embed evidence-based best practices in national policy, 2) Increase the quantity and quality of data in the SPARCO database by i) increasing the number of enrolled SCD patients to 7,000 by integrating a new satellite site in Zanzibar and implementing newborn screening (NBS) across the country, (in collaboration with the America Society of Hematology); ii) using SMS reminders and age-specific patient educational programs to boost clinic attendance at follow-up visits to collect longitudinal data; 3) Enhance the utilization of the customized multi-level SCD Standards of Care (SoC) in the Tanzanian health system by engaging with the Ministry of Health to promote the adoption and use of the SoC from tertiary care level to home; 4) partner with existing programs in and outside the consortium to conduct short, medium and long term training and fellowship programs on the clinical management and research on SCD to strengthen skills in SCD care and research; and 5) Conduct cohort studies to improve understanding of current status of the disease and risk-modifiers (specifically on the genetic variability in fetal hemoglobin and kidney dysfunction and effect of Hydroxyurea on immune activation), and implementation research to evaluate planned interventions (specifically the feasibility, acceptability and sustainability of NBS, Hydroxyurea usage and malaria prophylaxis) aiming at elucidating best approaches to scale-up introduction of these preventive and therapeutic interventions in the local context. Collectively, the project will increase the amount and quality of data on SCD in SSA, enable growth of a critical mass of researchers and generate evidence that will inform policy change which, concurrent with the growth in the standards of care, will lead to the reduction in the morbidity and mortality due to SCD in SSA.

项目摘要在撒哈拉以南非洲（SSA）中，镰状细胞病（SCD）的烧伤最高，其中超过75％的患者目前居住。坦桑尼亚是受该疾病影响最大的国家之一，估计有11,000个出生一年，世界第五。解决SSA中SCD烧伤的主要挑战是缺乏多站点的SCD患者人群；无法部署一致的护理标准；人类资源能力的数量和技能限制以及与非洲SCD相关的领域的研究有限语境。 2017年，坦桑尼亚，加纳和尼日利亚的三个SSA国家合作建立了镰刀泛非研究联盟（SPARCO）解决这些挑战。以取得成功为基础日期，Sparco-Tanzania旨在扩大作为SCD培训和研究卓越的中心长期目标以促进对SCD的护理并为财团做出贡献，以产生证据告知部署SSA的有效干预措施。具体而言，Sparco-Tanzania的目的是1）增强与SSA网络中SCD成员的沟通与合作，以参与大陆范围内研究并创建一个“政策翻译小组”，该小组将嵌入基于证据的最佳实践策略，2）通过i）增加SPARCO数据库中数据的数量和质量通过整合桑给巴尔的新卫星站点并实施新生儿，将SCD患者招募到7,000名全国筛查（NB）（与美国血液学协会合作）； ii）使用短信提醒和特定年龄的患者教育计划，以提高后续访问时诊所的出勤纵向数据； 3）增强了自定义的多级SCD护理标准（SOC）的利用坦桑尼亚卫生系统通过与卫生部互动以促进SOC的采用和使用从三级护理级别到家； 4）与财团内外的现有计划合作以进行有关SCD的临床管理和研究的短期，中和长期培训和奖学金计划增强SCD护理和研究的技能； 5）进行队列研究以提高对疾病和风险模型的现状（尤其是关于胎儿血红蛋白的遗传变异性羟基脲对免疫激活的肾功能障碍和影响）和实施研究以评估计划的干预措施（特别是NBS，羟基脲的可行性，可接受性和可持续性和预防疟疾）旨在阐明最佳方法，以扩大这些预防和在本地情况下的治疗干预措施。该项目共同增加了有关SSA中SCD的数据，可以增长大量研究人员并产生证据，以告知政策变化，这与护理标准的增长同时将导致减少 SSA中SCD引起的发病率和死亡率。