This paper is in the following e-collection/theme issue:

Big Data for Health Promotion and Health Equity (27) Public Health Information Exchange Technologies (55)

Published on in Vol 13, No 3 (2021):

A Virtual Data Repository Stimulates Data Sharing in a Consortium

A Virtual Data Repository Stimulates Data Sharing in a Consortium

A Virtual Data Repository Stimulates Data Sharing in a Consortium

Authors of this article:

Suzanne Siminski1 ;   Soyeon Kim1 ;   Adel Ahmed1 ;   Jake Currie1 ;   Alex Benns1 ;   Marjan Javanbakht2 ;   Amy Ragsdale2 ;   Pamina Gorbach2
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    Research data may have substantial impact beyond the original study objectives. The Collaborating Consortium of Cohorts Producing NIDA Opportunities (C3PNO) facilitates the combination of data and access to specimens from nine NIDA-funded cohorts in a virtual data repository (VDR).

    Unique challenges were addressed to create the VDR. An initial set of common data elements was agreed upon, selected based on their importance for a wide range of research proposals. Data were mapped to a common set of values. Bioethics consultations resulted in the development of various controls and procedures to protect against inadvertent disclosure of personally identifiable information. Standard operating procedures govern the evaluation of proposed concepts, and specimen and data use agreements ensure proper data handling and storage.

    Data from eight cohorts have been loaded into a relational database with tables capturing substance use, available specimens, and other participant data. A total of 6,177 participants were seen at a study visit within the past six months and are considered under active follow-up for C3PNO cohort participation as of the third data transfer, which occurred in January 2020. A total of 70,391 biospecimens of various types are available for these participants to test approved scientific hypotheses. Sociodemographic and clinical data accompany these samples.

    The VDR is a web-based interactive, searchable database available in the public domain, accessed at www.c3pno.org. The VDR are available to inform both consortium and external investigators interested in submitting concept sheets to address novel scientific questions to address high priority research on HIV/AIDS in the context of substance use.

    Keywords: common data elements, data repository

    Abbreviations: National Institute on Drug Abuse (NIDA), Collaborating Consortium of Cohorts Producing NIDA Opportunities (C3PNO), human immunodeficiency virus (HIV), acquired immunodeficiency syndrome (AIDS), injecting drug users (IDU), virtual data repository (VDR)

    Correspondence: siminski@frontierscience.org*