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.