Saturday, September 7, 2024
9/7/2024
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.
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