Sickle Pan-African Research Consortium (SPARCO)- Tanzania

Sickle 泛非研究联盟 (SPARCO) - 坦桑尼亚

• 批准号: 10625454
• 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
• 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/10625454
• 关键词: APOL1 gene; Address; Adoption; Advocacy; Affect; Africa; Africa South of the Sahara; African; Age; American Society of Hematology; Area; Authorization documentation; Birth; Caring; Cells; Clinic; Clinical; Clinical Management; Clinical Research; Cohort Studies; Collaborations; Collection; Communication; Comprehensive Health Care; Consent; Country; Creatinine; 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 Personnel; Health system; Healthcare; 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; Patient Education; Patients; Phenotype; Policies; Postdoctoral Fellow; Prophylactic treatment; Proteins; Pyrimethamine; Readiness; Recommendation; Reporting; Research; Research Personnel; Research Training; Risk; 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; effective intervention; electronic data; evidence base; experience; follow-up; genetic variant; health training; hydroxyurea; immune activation; implementation research; improved; kidney dysfunction; meetings; member; mortality; operation; preventive intervention; programs; scale up; screening; screening program; shared database; sickling; skills; standard of care; success; tertiary care; treatment program

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 镰状细胞病（SCD）的负担在撒哈拉以南非洲（SSA）最高，超过75%的患者 目前居住。坦桑尼亚是受该疾病影响最严重的国家之一，估计有11，000名新生儿 一年，世界第五高。在撒哈拉以南非洲解决SCD负担的主要挑战是 缺乏多中心、描述良好的SCD患者队列;未能部署一致的护理标准;人类 资源能力在数量和技能方面有限，在非洲与可持续发展有关的领域的研究有限 上下文2017年，坦桑尼亚、加纳和尼日利亚这三个撒哈拉以南非洲国家联手建立了"镰刀"组织。 泛非研究联合会（SPARCO）致力于应对这些挑战。在取得的成功基础上， 截至目前，SPARCO-坦桑尼亚旨在扩大作为SCD培训和研究卓越中心的规模， 长期目标是促进SCD的治疗，并为联盟提供证据， 为在撒哈拉以南非洲部署有效干预措施提供信息。具体而言，SPARCO-坦桑尼亚的目标是：1）加强 与南亚区域网络中的SCD成员进行沟通和协作， 研究并创建一个"政策翻译小组"，将以证据为基础的最佳做法纳入国家政策。 政策，2）通过i）增加SPARCO数据库中数据的数量和质量 通过在桑给巴尔整合一个新的卫星站点并实施新生儿 全国范围内的筛查（NBS），（与美国血液学会合作）; ii）使用SMS 提醒和针对特定年龄的患者教育计划，以提高随访时的门诊出勤率， 纵向数据; 3）提高定制的多层次SCD护理标准（SoC）的利用率 坦桑尼亚卫生系统，与卫生部合作，促进采用和使用标准守则 从三级护理水平到家庭; 4）与联盟内外的现有项目合作， SCD临床管理和研究的短期、中期和长期培训和奖学金计划 加强SCD护理和研究的技能;以及5）进行队列研究，以提高对 疾病的现状和风险修饰因素（特别是胎儿血红蛋白的遗传变异性， 肾功能不全和羟基脲对免疫激活的影响），并实施研究，以评估 计划的干预措施（特别是NBS的可行性、可接受性和可持续性， 和疟疾预防），旨在阐明扩大采用这些预防和 在当地进行治疗干预。总的来说，该项目将提高 关于SSA中SCD的数据，使研究人员的临界质量得以增长，并产生证据， 政策变化，与护理标准的提高同时，将导致 发病率和死亡率由于SCD在SSA。

项目成果

Promoting access of hydroxyurea to sickle cell disease individuals: Time to make it an essential medicine.

• DOI: 10.12688/f1000research.111300.1
• 发表时间: 2022
• 期刊: F1000Research

Nasopharyngeal Carriage and Antibiogram of Pneumococcal and Other Bacterial Pathogens from Children with Sickle Cell Disease in Tanzania.

坦桑尼亚镰状细胞病儿童的肺炎球菌和其他细菌病原体的鼻咽携带和抗菌谱。

• DOI: 10.2147/idr.s367873
• 发表时间: 2022
• 期刊: INFECTION AND DRUG RESISTANCE
• 影响因子: 3.9
• 作者: Mutagonda, Ritah F.;Bwire, George;Sangeda, Raphael Zozimus;Kilonzi, Manase;Mlyuka, Hamu;Ndunguru, Joyce;Jonathan, Agnes;Makani, Julie;Minja, Irene Kida;Ruggajo, Paschal;Balandya, Emmanuel;Kamuhabwa, Appolinary A. R.
• 通讯作者: Kamuhabwa, Appolinary A. R.

Prevalence of Hemoglobin-S and Baseline Level of Knowledge on Sickle Cell Disease Among Pregnant Women Attending Antenatal Clinics in Dar-Es-Salaam, Tanzania.

• DOI: 10.3389/fgene.2022.805709
• 发表时间: 2022
• 期刊: Frontiers in genetics
• 影响因子: 3.7

Outcomes of Hydroxyurea Accessed via Various Means and Barriers Affecting Its Usage Among Children with Sickle Cell Anaemia in North-Western Tanzania.

• DOI: 10.2147/jbm.s380901
• 发表时间: 2023
• 期刊: Journal of blood medicine
• 影响因子: 2

The Effects of Sickle Cell Disease on the Quality of Life: A Focus on the Untold Experiences of Parents in Tanzania.

镰状细胞疾病对生活质量的影响：关注坦桑尼亚父母的无数经历。

• DOI: 10.3390/ijerph19116871
• 发表时间: 2022-06-04
• 期刊: INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH
• 作者: Kilonzi, Manase;Mwakawanga, Dorkasi L.;Felician, Fatuma Felix;Mlyuka, Hamu J.;Chirande, Lulu;Myemba, David T.;Sambayi, Godfrey;Mutagonda, Ritah F.;Mikomangwa, Wigilya P.;Ndunguru, Joyce;Jonathan, Agnes;Ruggajo, Paschal;Minja, Irene Kida;Balandya, Emmanuel;Makani, Julie;Sirili, Nathanael
• 通讯作者: Sirili, Nathanael