Yale Clinical and Translational Science Award: Calhoun Diversity in Health Related Research

随着循证干预措施的广泛实施， 如预防性青霉素和肺炎球菌疫苗接种，镰状细胞病（SCD）已经从一种 从威胁生命的儿童期疾病发展为一种慢性疾病，导致成年期寿命显著缩短。SCD 当患者从儿科过渡到成人护理时，他们面临最大的不良结局风险， 疾病进展和社会经济并发症汇合。有证据表明， 支持患者和护理人员的结构化过渡计划将有助于减轻许多挑战 在这片复杂的土地上行走时所面临的挑战。美国儿科学会 发布了一项综合指南，支持从青少年到成年的医疗保健过渡 在医疗之家，这表明有希望改善青少年的过渡护理。尽管如此， 对于患有SCD的青少年和年轻成年人，仍然缺乏结构化的过渡计划。在这 根据我的建议，我将使用实施科学的方法来促进对AAP指导方针的更多吸收 进入临床实践，长期目标是增加结构化过渡计划的存在， AYA- SCD。为了实现这一目标，我将使用干预绘图，一个基于科学的实施方案， 规划框架，以深思熟虑地确定一套核心执行战略， 根据AAP指南（目标1）制定结构化过渡计划。然后我将驾驶这些 地方一级的战略，以评估可行性和可接受性（目标2）。这些数据将提供一个多- 中心研究，旨在结合AAP指南使用经过验证的实施策略， 以降低发病率为长期目标的AYA-SCD结构化过渡方案的增加 和死亡率的高风险群体，这是深受医疗保健不公平的影响。我会利用 在YCCI的资源，成功地执行拟议的项目，以及发展我的专业知识， 实施科学，临床研究方法，健康公平和干预设计;这包括教学 YCCI提供的课程，参加每月的YCCI研究进展研讨会，并继续 参与临床和转化研究的研究机会（ROCATS）队列， 为致力于临床和转化研究的初级教师提供基础知识。我也会 在研究开发、执行和成果传播过程中与YCCI文化大使接触 以确保我的学术工作反映SCD社区的需求。在我的指导下， 导师团队，其中包括镰状细胞病、实施科学和健康公平方面的专家 结果研究，以及YCCI I提供的职业发展资源将实现我的长期目标 成为一名独立的医生科学家，致力于通过以下方式改善AYA-SCD的健康结果： 严格设计和实施多层次的卫生干预措施。

CANDIDATE PROJECT ABSTRACT - With the widespread implementation of evidence-based interventions such as prophylactic penicillin and pneumococcal vaccinations, sickle cell disease (SCD) has evolved from a life-threatening disease of childhood to a chronic condition with a strikingly shortened adult life span. SCD patients are at greatest risk for poor outcomes as they transition from pediatric to adult care, a time in which disease progression and socioeconomic complications converge. Evidence suggests that the implementation of structured transition programs to support patients and caregivers will help mitigate many of the challenges that AYA-SCD face as they navigate this complicated landscape. The American Academy of Pediatrics has published a comprehensive guideline, Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home, which has shown promise in improving transition care for adolescents. Nonetheless, there remains a paucity of structured transition programs for adolescents and young adults with SCD. In this proposal, I will use Implementation Science methods to promote the increased uptake of the AAP guidelines into clinical practice with the long-term goal of increasing the presence of structured transition programs for AYA- SCD. To accomplish this objective, I will use Intervention Mapping, an implementation science-based planning framework, to thoughtfully identify a core set of implementation strategies that will facilitate the development of structured transition programs based on the AAP guidelines (Aim 1). I will then pilot these strategies at a local level to evaluate for feasibility and acceptability (Aim 2). These data will inform a multi- center study aimed at using proven implementation strategies in conjunction with AAP guidelines to facilitate the increase of structured transition programs for AYA-SCD with the long-term goal of decreasing morbidity and mortality in this high risk group which is deeply impacted by healthcare inequities. I will leverage the resources at YCCI to successfully execute the proposed project as well as to develop my expertise in Implementation Science, clinical research methods, health equity and intervention design; this includes didactic coursework offered by YCCI, participation in monthly YCCI Research In Progress seminars and continued participation in the Research Opportunities for Clinical and Translational Studies (ROCATS) cohort which provides foundational knowledge to junior faculty committed to clinical and translational research. I will also engage with the YCCI Cultural Ambassadors during study development, execution and dissemination of results to ensure that my scholarly work reflects the needs of the SCD community. With the guidance of my mentorship team, which includes experts in sickle cell disease, implementation science and health equity outcomes research, and the career development resources provided by YCCI I will achieve my long-term goal of becoming an independent physician-scientist dedicated to improving health outcomes in AYA-SCD through the rigorous design and implementation of multi-level health interventions.