New York City Sickle Cell Implementation Science Consortium

纽约市镰状细胞实施科学联盟（NYCSIS）的目标是 利用六家医院的“学习实验室”和 西奈山卫生系统（MSHS），以提高最佳做法对成人的渗透率， 青少年镰状细胞病（SCD）。纽约市拥有世界上最大的SCD之一 MSHS为700多名成人和青少年提供SCD护理。的 NYCSIS团队及其社区合作伙伴已经确定了三个关键的知识到行动 差距：1）改善成人急诊科（艾德）的疼痛管理，2）重新连接 成年后只使用艾德的人回到纵向护理和3）交付 低密度（即SCD患者人数较少）环境中的综合护理， 接触SCD血液专家的机会有限。我们的环境和研究基础设施使我们 由于MSHS拥有强大的多站点急诊医学，因此可以很好地解决这三个问题 研究基础设施（可访问数百名患有SCD的成年人， 护理）以及低密度医院和社区卫生中心， 专家（如血液科医生和其他专家）无法提供。我们提出四个目标。 目标1：进行全社区需求评估，以a）确定其他需求领域， 和B）对于已经制定的三种干预措施，了解障碍和促进因素， 在每个护理地点扩展和实施它们;目标2：设计实施研究 目标3：参与发展中国家的研究， 与数据协调中心和NHLBI合作的SCD登记研究;以及目标4： 开展执行情况研究，测试多模式、多部门的干预措施，以a）改善 SCD疼痛的紧急护理，B）将无关联的成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。纽约犯罪现场调查组有足够的资源 和社区网络，以严格收集登记数据并与其他U 01站点整合， 并执行针对城市SCD人口需求的实施研究， 特别是在接触SCD专家的机会有限的低密度护理环境中。

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.