ABCD-USA Consortium: Coordinating Center

University Of California, San Diego, La Jolla CA

Investigators

Linked publications & trials

Abstract

PROJECT SUMMARY Supplemental funds are requested to continue achieving three key objectives of the ABCD Study: dissemination, resource sharing, and comprehensive genomic analysis. To accomplish this, the ABCD consortium will contract a professional communications vendor to perform the following services: generating engaging and accurate information for different audiences in various forms, developing materials (e.g., flyers, cards, newsletters, infographics), including graphic design; supporting social media, including content creation and managing an interactive forum; foreign language translation of all materials into Spanish to accommodate Spanish monolingual participants and families; providing support for meeting and event logistics, including webinars for families and the general public, while also targeting different research communities; conducting audience research/focus groups (as needed) to guide the development of new assessment elements and acceptability of materials for various groups seeking information about the study results; and implementing retention campaigns through channels such as outreach and social media (as needed) to bolster retention. Additional funds are also necessary for the continued support of biorepository functions currently provided by the Altman Clinical and Translational Research Institute (ACTRI) for maintaining a Biobank for salivary fluid samples and shed deciduous teeth contributed by ABCD participants. Funding is requested for: ACTRI staff effort; lab supplies, including tubes for aliquoting, freezer boxes, and biosafety materials; shipping of the samples to ACTRI; secure storage for saliva samples, housed in three to four secure, monitored freezers, and secure dry storage for teeth; a dedicated cold-empty freezer for emergency use; daily physical monitoring of all freezers, 24-hour electronic monitoring, and fault notification capabilities; a license fee for FreezerWorks software for sample tracking, management, and freezer inventory; and the development of an API to allow ACTRI to access the NBDC Portal. Funding is also requested to replace centrifuges at all sites with new refrigerated centrifuges to reduce the incidence of poor quality when aliquoting serum samples. Lastly, funding is also requested for whole genome sequencing and quality control of sequencing data for remaining unsequenced participants in the cohort, as well as confirmatory testing (through CLIA-certified service) and provision of genetic counseling to individuals who meet criteria for pathogenic medically actionable secondary findings. Genetic counseling will also be offered to individuals who may need additional information to decide whether to consent to receive their results.