Collaborative Initiative on Fetal Alcohol Spectrum Disorders (CIFASD) Data Coordination Resource

摘要 据报道，全球近10%的孕妇有产前酒精暴露(PAE)(Popova， 兰格、普罗布斯特、格梅尔和雷姆，2017)。美国对胎儿酒精谱的保守估计 一年级儿童的精神障碍(FASD)为1-5%(May等人，2018年)。这些数字预计还会增加， 鉴于孕妇酒精使用量略有但稳步上升(Denny，Acero，Terplan，&Kim，2020)。 NIAAA建立了胎儿酒精谱系障碍合作倡议(CIFASD)，以告知和 通过高度集成的多学科研究，为FASD制定有效的干预和治疗方法 基础科学家和临床研究人员参与的研究计划。CIFASD成功的核心是强大 通过管理资源和数据协调资源(DCR)提供的中央协调。 作为CIFASD5的一部分，DCR将与财团内的所有项目和资源合作，以提供 在数据收集、存储和共享方面提供支持和管理。基于这一核心作用， DCR将协调进行人体试验的CIFASD5调查人员的努力，以满足 将数据存入NIAAA数据档案(NDA)的要求，并将作为 一年两次向国家数据中心转移数据的国家数据中心。DCR将负责确保#年的数据共享 CIFASD5符合NIH政策。此外，DCR将支持行政资源的努力 在跟踪CIFASD5的进展情况方面。为了实现这些目标，DCR提出了以下具体目标： 1.为CIFASD5创建数据协调资源数据库。 2.担任NIAAA数据档案馆的CIFASD5联络点。 3.扩展DCR数据库的功能。 4.支持CIFASD归档数据的分发。 5.维护经同意的CIFASD研究参与者的在线登记，可供招聘 进入其他项目。

ABSTRACT Almost 10% of pregnancies world-wide were reported to have prenatal alcohol exposure (PAE) (Popova, Lange, Probst, Gmel, & Rehm, 2017). In the United States a conservative estimate of Fetal Alcohol Spectrum Disorders (FASD) in first-grade children was 1-5% (May et al., 2018). These numbers are expected to increase, given the slight but steady rise in alcohol use among pregnant women (Denny, Acero, Terplan, & Kim, 2020). NIAAA established the Collaborative Initiative on the Fetal Alcohol Spectrum Disorders (CIFASD) to inform and develop effective interventions and treatment approaches for FASD through a highly integrated, multidisciplinary research program involving basic scientists and clinical investigators. Central to the success of CIFASD is strong central coordination provided through the Administrative Resource and a Data Coordination Resource (DCR). As part of CIFASD5, the DCR will collaborate with all projects and resources within the consortium to provide support and management with respect to data collection, storage and sharing. Based on this central role, the DCR will coordinate the efforts of the CIFASD5 investigators conducting human subjects research to meet the requirement of depositing data into the NIAAA Data Archive (NDA) and will serve as the primary contact with NDA in the biannual transfer of data to the NDA. The DCR will be responsible for ensuring data sharing in CIFASD5 conforms with NIH Policy. In addition, the DCR will support the efforts of the Administrative Resource in tracking progress of CIFASD5. To meet these goals, the DCR proposes the following specific aims: 1. Create a Data Coordination Resource (DCR) database for CIFASD5. 2. Serve as the CIFASD5 point of contact for the NIAAA Data Archive. 3. Expand the functionality of the DCR database. 4. Support the distribution of archived CIFASD data. 5. Maintain an online registry of consented CIFASD research participants available for recruitment into other projects.