A Virtual Data Repository Stimulates Data Sharing in a Consortium

Authors

  • Suzanne Siminski Frontier Science Foundation
  • Soyeon Kim Frontier Science Foundation
  • Adel Ahmed Frontier Science Foundation
  • Jake Currie Frontier Science Foundation
  • Alex Benns Frontier Science Foundation
  • Marjan Javanbakht UCLA
  • Amy Ragsdale UCLA
  • Pamina Gorbach UCLA

DOI:

https://doi.org/10.5210/ojphi.v13i3.10878

Abstract

Abstract

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*

Author Biographies

Suzanne Siminski, Frontier Science Foundation

CEO, Frontier Science Foundation

MPI: Collaborating Consortium of Cohorts Producing NIDA Opportunities (C3PNO)

Soyeon Kim, Frontier Science Foundation

PhD Statistician

Adel Ahmed, Frontier Science Foundation

Director of Software Engineering

Jake Currie, Frontier Science Foundation

Software project manager

Alex Benns, Frontier Science Foundation

Project Manager

Marjan Javanbakht, UCLA

Epidemiology, PhD

Amy Ragsdale, UCLA

Epidemiology, Project Director

Pamina Gorbach, UCLA

Professor, Department of Epidemiology, Fielding School of Public Health

Division of Infectious Diseases, David Geffen School of Medicine

MPI: Collaborating Consortium of Cohorts Producing NIDA Opportunities (C3PNO)

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Published

2021-12-24

How to Cite

Siminski, S., Kim, S., Ahmed, A., Currie, J. ., Benns, A. ., Javanbakht, M. ., Ragsdale, A., & Gorbach, P. (2021). A Virtual Data Repository Stimulates Data Sharing in a Consortium. Online Journal of Public Health Informatics, 13(3). https://doi.org/10.5210/ojphi.v13i3.10878