The Delaware Comprehensive Sickle Cell Research Center

项目摘要 特拉华州镰状细胞病（SCD）COBRE是生物医学研究的多学科中心 该研究所是一个卓越的研究所，其主题重点是镰状细胞病的转化、临床和心理社会研究。 建立在通过COBRE第一阶段资金开发的生物医学和临床研究基础设施上， 成功招募了几名有前途的早期职业调查员，DE SCD COBRE正在提交一份 竞争性续延申请，以继续能力建设和创新研究。在第1阶段，DE SCD COBRE在特拉华州为超过1300万美元的新资金做出了贡献。DE SCD COBRE的集成 在特拉华州，IDEA网络仍然是成功招募和培训 早期职业调查员，以及试点资金。在此COBRE第2阶段提交中，DE SCD COBRE 提出了一个新的指导模式，一个新的试点资助计划，一个新的临床研究和数据信息学 核心调查员和四名新目标调查员。这些新增加的内容都建立在第1阶段的成功基础上， 对力量和增长的领域做出反应。此外，我们还开发了一个多学科和系统的 研究社区和卫生保健系统内的污名化和种族主义对 常规健康维护和针对性干预对SCD患者的有效性。我们将评估 严重SCD合并症的生物标志物（项目4），让我们的患者和社区参与评估 常规护理的障碍（项目1、2和3），并探索提高医疗保健自我效能的工具 提供者（项目1）和患者（项目1，2和3），同时面对种族主义如何影响 儿童和年轻人的健康（项目1、2和3）。对特拉华州镰状细胞贫血症的各个方面至关重要 研究计划是中心的首要假设，有效管理一个共同的， 先天性，多系统疾病需要全面的调查，跨越生物，医学， 影响疾病严重程度和干预措施有效性的心理和社会因素。

PROJECT SUMMARY The Delaware Sickle Cell Disease (SCD) COBRE is a multidisciplinary center of biomedical research excellence with a thematic focus on translational, clinical and psychosocial research in sickle cell disease. Building on a biomedical and clinical research infrastructure developed through COBRE Phase 1 funding, and the successful recruitment of several promising early career investigators, the DE SCD COBRE is submitting a competitive renewal application to continue capacity-building and innovative research. In Phase 1, the DE SCD COBRE contributed to more than $13 million in new funding in Delaware. Integration of the DE SCD COBRE within the Delaware IDeA network continues to be integral to both the successful recruitment and training of early career investigators, as well as pilot funding. In this Phase 2 COBRE submission, the DE SCD COBRE presents a new mentoring model, a new pilot funding program, a new Clinical Research and Data Informatics Core and four new target investigators. Each of these new additions builds on success in Phase 1 and is responsive to areas of strength and growth. Additionally, we developing a multidisciplinary and systematic approach to study the influence of stigma and racism within communities and the healthcare system on the efficacy of both routine health maintenance and targeted interventions in patients with SCD. We will evaluate biomarkers for severe SCD co-morbidities (Project 4), engage our patients and community to take stock of barriers to routine care (Project 1, 2, and 3) and explore tools to improve self-efficacy among health care providers (Project 1) and patients (Project 1, 2, and 3), while simultaneously confronting how racism impacts the health of children and young adults (Project 1, 2, and 3). Central to all aspects of the Delaware Sickle Cell Research Program is the overarching Center hypothesis that effective management of a common, congenital, multi-system disease requires comprehensive investigations spanning the biological, medical, psychological, and societal factors that impact both the severity of the disease and the efficacy of interventions.