Specifying sickle cell disease interventions: a study protocol of the Sickle Cell Disease Implementation Consortium (SCDIC).

Specifying sickle cell disease interventions: a study protocol of the Sickle Cell Disease Implementation Consortium (SCDIC).
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DOI:
10.1186/s12913-018-3297-1
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发表时间:
2018-06-27
影响因子:
2.8
通讯作者:
Sickle Cell Disease Implementation Consortium
Sickle Cell Disease Implementation Consortium
中科院分区:
医学3区
文献类型:
--
作者:
Baumann AA;Belle SH;James A;King AA;Sickle Cell Disease Implementation Consortium

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镰状细胞病(SCD)是一种遗传性血液疾病,可导致终生贫血、剧烈疼痛和终末器官损伤,从而导致过早死亡。虽然SCD领域已经取得了重大的医学进步,但仍有许多工作要做,以提高SCD患者的护理质量。这项研究利用了镰状细胞病实施联盟(SCDIC),这是一个由八个学术网站组成的联盟,旨在测试实施策略,这些策略可能会导致更快地应用NHLBI治疗SCD的指南。本报告通过具体说明正在制定的干预措施,记录了支持联合体的进程。这项研究包括三个步骤。每个研究中心的主要研究者和两名了解干预措施的研究中心代表(例如,研究协调员或提供干预措施的人员)将回答旨在获取干预措施组成部分的在线调查。研究中心代表将在研究期间完成三次调查:干预措施制定期间、干预措施实施一年后和研究结束时(2年后)。在流程的第一年进行现场访问和半结构化访谈(步骤2),以了解现场的背景。第3步包括制定一个框架,详细说明SCDIC在各地点的多组成部分干预措施。这项研究的结果,SCDIC的框架,将能够准确复制和扩展已发表的研究,促进SCD研究的翻译到不同的人群和环境,并允许在不同的背景下和不同的人群跨研究的干预成分的影响进行理论测试。ClinicalTrial.Gov(#NCT03380351)。2017年12月21日注册。
Sickle cell disease (SCD) is an inherited blood disorder that results in a lifetime of anemia, severe pain, and end-organ damage that can lead to premature mortality. While the SCD field has made major medical advances, much needs to be done to improve the quality of care for people with SCD. This study capitalizes on the Sickle Cell Disease Implementation Consortium (SCDIC), a consortium of eight academic sites aiming to test implementation strategies that could lead to more accelerated application of the NHLBI guidelines for treating SCD. This report documents the process to support the consortium by specifying the interventions being developed. This study consists of three steps. The Principal Investigator of each site and two site representatives who are knowledgeable of the intervention (e.g., study coordinator or the person delivering the intervention) will answer an online survey aiming to capture components of the interventions. This survey will be completed by the site representatives three times during the study: during the development of the interventions, after one year of the interventions being implemented, and at the end of this study (after 2 years). A site visit and semi-structured interview (Step 2) in the first year of the process will capture the context of the sites. Step 3 comprises of the development of a framework with the details of the multi-component SCDIC interventions at the sites. The outcome of this study, a framework of the SCDIC, will enable accurate replication and extension of published research, facilitating the translation of SCD studies to diverse populations and settings and allowing for theory testing of the effects of the intervention components across studies in different contexts and for different populations. ClinicalTrial.Gov (#NCT03380351). Registered December 21, 2017.
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