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

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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.