Recruitment and Engagement in Care to Impact Practice Enhancement (RECIPE) for Sickle Cell disease

项目摘要 招募和参与护理以影响实践增强（RECIPE）项目有一个目标 通过识别未接受镰状细胞病（SCD）治疗的个体， 以SCD为基础的护理。多达50%的受影响成年人可能不会看到SCD专家，这限制了分娩 疾病特异性筛查和疾病修饰疗法的治疗。问题恶化， 生活在农村地区或面临社会经济挑战的个人，已知会加剧健康差距。这 自从NHLBI资助的Sickle项目开始以来，一个调查小组一直在努力解决这个问题 细胞疾病实施联盟（SCDIC）。在我们以前的研究中，我们确定了优化的需要， 研究方法，使个人参与循证SCD护理和既定的基础术语 通过德尔菲共识过程，针对“无关联的SCD患者”和“SCD专家”。当前 RECIPE项目将通过应用 实施科学研究，以调整人类免疫缺陷病毒（艾滋病毒）护理中使用的现有方法。 与SCD类似，艾滋病毒感染者面临着重大的医疗保健审查，导致相互的疑虑 关于医疗保健。在这个项目中，我们将调整患者识别和参与艾滋病毒的模型，以适应SCD 采用多阶段的以病人为导向的流程我们将这项工作嵌入到交互式系统框架中， 传播和执行，以确保在《公约》的每个阶段高质量地执行和评价 联系进程，重点是卫生系统随时准备为传统上服务不足的人提供服务 人口和这些领域的工作的可持续性。

PROJECT ABSTRACT The Recruitment and Engagement in Care to Impact Practice Enhancement (RECIPE) project has a goal to reduce the science-to-practice gap in sickle cell disease (SCD) by identifying individuals who are not receiving guideline based SCD care. Up to 50% of affected adults may not see SCD specialists, which limits the delivery of disease-specific screenings and treatment with disease modifying therapies. Issues are worsened for individuals living in rural regions or with socio-economic challenges known to accentuate health disparities. This team of investigators has been working to address this problem since the inception of the NHLBI-funded Sickle Cell Disease Implementation Consortium (SCDIC). In our previous studies, we identified a need to optimize research methodologies to engage individuals in evidence-based SCD care and established foundational terms through a Delphi consensus process, for “unaffiliated patients with SCD” and “SCD specialist”. The current project, RECIPE, will advance these efforts to identify and link unaffiliated patients to SCD specialists by applying implementation science research to adapt existing methods used in human immunodeficiency virus (HIV) care. Similar to SCD, individuals with HIV have faced significant healthcare scrutiny causing reciprocal misgivings about healthcare. In this project, we will adapt models for patient identification and engagement in HIV to SCD using a multi-staged, patient-oriented process. We embed this work in the Interactive Systems Framework for Dissemination and Implementation to ensure high quality implementation and evaluation in each stage of the affiliation process, with emphasis on the readiness of health systems to serve traditionally underserved populations and sustainability of this work in these areas.