Sickle Pan-African Research Consortium Clinical Coordinating Center (SPARCO Center)

Sickle泛非研究联盟临床协调中心（SPARCO中心）

• 批准号: 10400073
• 负责人: Julie Makani
• 金额: $ 64.84万
• 依托单位: MUHIMBILI UNIVERSITY/ ALLIED HLTH SCIS
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-04-01 至 2026-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10400073
• 关键词: Achievement; Address; Africa; Africa South of the Sahara; African; Area; Award; Biological Specimen Banks; Birth; Caring; Clinical; Cohort Studies; Collaborations; Communication; Comprehensive Health Care; Confidentiality of Patient Information; Country; Data; Data Coordinating Center; Data Element; Data Set; Databases; Descriptive Epidemiology; Development; Disease; Disease Management; Education; Elements; Enrollment; Ensure; Epidemiology; Genetic Counseling; Genomics; Ghana; Goals; Government Agencies; Growth; Guidelines; Health; Health care facility; Health education; Healthcare; Hematology; Individual; Interdisciplinary Study; International; Knowledge; Link; Morbidity - disease rate; National Heart, Lung, and Blood Institute; Neonatal Screening; Nigeria; Ontology; Outcome; Participant; Patients; Phase; Phenotype; Policies; Privatization; Procedures; Process; Program Development; Protocols documentation; Public Health; Quality of life; Recommendation; Registries; Reporting; Research; Research Methodology; Research Personnel; Research Priority; Research Project Grants; Resource Sharing; Resources; Secure; Sickle Cell; Sickle Cell Anemia; Sickle Cell Trait; Site; System; Tanzania; Therapeutic; Training Programs; authority; cell community; cell registry; cohesion; cohort; comparative; curative treatments; data access; data harmonization; data management; data repository; data sharing; disease phenotype; disease registry; education research; effective intervention; evidence base; experience; follow-up; global health; hydroxyurea; implementation intervention; implementation research; improved; innovation; mortality; operation; programs; research study; sickling; skill acquisition; skills; working group

Project Summary/Abstract Sickle Cell Disease (SCD) is a disorder of public health significance; common [300,000 global annual births, over 75% in Sub-Saharan Africa (SSA)], with a high burden of morbidity and mortality despite evidence based, effective interventions. Background: Sickle Pan-African Research Consortium (SPARCO) consisting of a hub in Tanzania and sub-award sites in three countries (Tanzania, Nigeria and Ghana) and the Sickle Africa Data Coordinating Center (SADACC) formed a SCD in Sub-Saharan Africa (SSA) Network. This successfully developed a registry and enrolled over 10,000 SCD patients; developed recommended standards of care for SCD management and facilitate skills development in clinicians, researchers and educators. A strategy for multi- site research was developed. The proposed phase: will entail growth of SPARCO from one entity into four entities, with SPARCO hub functioning as the clinical coordinating center (SPARCO Center) and the 3 sub- awards becoming autonomous SPARCO sites, with addition of three more sites in Africa. Unique features and innovation: Encouraging autonomy, whilst allowing sites to adapt activities to their settings whilst at the same retain network cohesiveness, allowing knowledge exchange. Furthermore, the integration of health, research and education is critical in areas with limited resources. Specific aims and approach: SPARCO Center will be responsible for facilitating and coordinating activities in SPARCO sites, enabling exchange of expertise and experience, sharing of resources and harmonize in order to implement SCD-related activities. SPARCO Center has six specific aims, to i) provide governance, oversight and operations for coordination of collaborative sites, by establishing a framework and procedures which will allow integration of new sites whilst strengthening the existing sites ii) expand the SCD registry database by enrolling 21,000 new participants to give a total of 34,000 participants and collect follow up data. In collaboration with SADaCC, SPARCO center will continue to refine database elements and harmonize SCD phenotype definitions. iii) support integration of consistent Standards of Care into SCD healthcare through dialogue with institutional, national, regional and global health authorities, Ministries of Health, public and private healthcare programs. iv) facilitate launching and successful completion of cohort and implementation research studies v) support participation in training programs by strengthening and developing partnerships with existing institutional, national, regional and international educational/training programs and vi) facilitate engagement with public and private partners at different levels across the globe, including sickle cell communities, public and private organizations in health, research and education. Expected application of results: To reduce the public health burden of SCD by establishing framework for research generating locally-appropriate evidence to address factors limiting successful implementation of interventions. SPARCO center will facilitate provision of comprehensive healthcare to increase survival and quality of life, whilst making a contribution to global scientific knowledge, enabling disease-modifying and curative treatment for SCD.

项目摘要/摘要 镰状细胞病（SCD）是一种具有公共健康意义的疾病；普通[300,000全球年度 撒哈拉以南非洲（SSA）的出生超过75％，尽管有证据表明发病率和死亡负担很高 基于有效的干预措施。背景：镰刀泛非研究财团（SPARCO），由 坦桑尼亚的枢纽和三个国家（坦桑尼亚，尼日利亚和加纳）和镰刀 数据协调中心（SADACC）在撒哈拉以南非洲（SSA）网络中形成了SCD。这成功 开发了注册表并招募了10,000多名SCD患者；开发了推荐的护理标准 SCD管理并促进临床医生，研究人员和教育工作者的技能发展。多种策略 开发了现场研究。提议的阶段：将使Sparco从一个实体成长为四个 实体，SPARCO HUB充当临床协调中心（Sparco Center）和3个子 - 奖项成为自治Sparco网站，在非洲增加了三个站点。独特的功能和 创新：鼓励自主权，同时允许站点适应其设置，同时进行设置 保持网络凝聚力，允许知识交流。此外，健康，研究的整合 在资源有限的领域，教育至关重要。具体目的和方法：Sparco中心将是 负责促进和协调Sparco站点的活动，从而实现专业知识的交流和 经验，共享资源并协调以实施与SCD相关的活动。 Sparco中心 具有六个具体目标，i）提供协作站点协调的治理，监督和运营， 通过建立一个框架和程序，该框架和程序将允许整合新站点，同时加强 现有站点ii）通过注册21,000名新参与者来扩展SCD注册表数据库 参与者并收集后续数据。与SADACC合作，Sparco中心将继续完善 数据库元素并协调SCD表型定义。 iii）支持一致标准的整合 通过与机构，国家，地区和全球卫生当局进行对话，将其护理到SCD医疗保健 卫生，公共和私人医疗计划部。 iv）促进启动和成功完成 队列和实施研究研究v）通过加强和 与现有机构，国家，地区和国际教育/培训建立合作伙伴关系 计划和vi）促进与全球不同级别的公共和私人合作伙伴交往， 包括镰状细胞社区，健康，研究和教育领域的公共和私人组织。预期的 结果的应用：通过建立研究框架来减轻SCD的公共卫生负担 生成适当的证据来解决限制干预措施成功实施的因素。 Sparco Center将促进提供全面的医疗保健，以提高生活质量和生活质量 为全球科学知识做出贡献，为SCD提供疾病改良和治疗治疗。