New York City Sickle Cell Implementation Science Consortium

纽约市镰刀细胞实现科学联盟(NYCSIS)的目标是 利用由6家医院和11家门诊诊所组成的“学习实验室” 芒特西奈山健康系统(MSHS)，以提高成人和 患有镰状细胞病(SCD)的青少年。纽约市拥有世界上最大的SCD之一 MSHS为700多名成年人和青少年提供SCD护理。这个 NYCSIS团队及其社区合作伙伴确定了三个关键的行动知识 差距：1)改进成人急诊科(ED)的疼痛管理，2)重新连接 成年后只使用急诊室进行纵向护理和3)交付的个人 在低密度(即较少的SCD患者)环境中提供全面护理， 获得SCD血液病专家治疗的机会有限。我们的环境和研究基础设施使我们 好来解决这三个问题，因为MSHS拥有强大的多站点急救医疗 研究基础设施(可访问数百名患有SCD的成年人，他们不使用初级 护理)以及低密度医院和社区卫生中心 无法联系到专家(例如，血液学家和其他专家)。我们提出了四个目标。 目标1：进行整个社区的需求评估，以a)确定其他需求领域， B)对于已经制定的三项干预措施，了解障碍和促进者 在每个护理地点推广和实施；目标2：设计实施研究 解决已确定的重要问题的研究；目标3：参与发展 与数据协调中心和NHLBI合作，建立SCD登记册；以及目标4： 进行执行研究，测试多模式、多部门干预措施，以a)改进 SCD疼痛的紧急护理，b)将独立的成年人重新连接到综合护理中，以及c) 在低SCD密度环境中提供全面护理。NYCSIS团队拥有资源 和社区网络，以严格收集注册数据并与其他U01站点整合， 并执行针对城市SCD人群需求的实施研究， 特别是在低密度护理环境中，获得SCD专家的机会有限。

The goal of the New York City Sickle Cell Implementation Science Consortium (NYCSIS) is to leverage a `learning laboratory' of six hospitals and eleven ambulatory practices within the Mount Sinai Health System (MSHS) to improve penetration of best practices for adults and adolescents with Sickle Cell Disease (SCD). New York City has one of the largest SCD populations in the US, and MSHS provides SCD care to over 700 adults and adolescents. The NYCSIS team and its community partners have identified three critical knowledge-to-action gaps: 1) improving pain management in adult emergency departments (ED), 2) reconnecting individuals who as adults use only the ED back into longitudinal care and 3) delivering comprehensive care in low-density (i.e. smaller numbers of people with SCD) settings with limited access to expert SCD hematologists. Our setting and research infrastructure position us well to address these three issues as MSHS has a robust multi-site emergency medicine research infrastructure (with access to hundreds of adults with SCD who do not utilize primary care) as well as low-density hospitals and community health centers where the full complement of experts (e.g. hematologists and other specialists) are not available. We propose four aims. Aim 1: Conduct a whole-community needs assessment to a) identify additional areas of need, and b) for the three interventions already developed, to understand barriers and facilitators to scaling and implementing them at each care locations; Aim 2: Design implementation research studies that address the identified issues of importance; Aim 3: Participate in the development of the SCD registry in collaboration with the Data Coordinating Center and NHLBI; and Aim 4: Conduct implementation studies that test multi-modal, multi-sector interventions to a) improve emergency care of SCD pain, b) reconnect unaffiliated adults into comprehensive care and c) deliver comprehensive care in low SCD density settings. The NYCSIS team has the resources and community network to rigorously collect and integrate registry data with other U01 sites, and to execute implementation studies that address the needs of urban SCD populations, particularly in low-density care settings with limited access to SCD experts.