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.

项目总结

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