The Collaborating Consortium of Cohorts Producing NIDA Opportunities (C3PNO), a joint project between UCLA and Frontier Science, recently published their VIrtual Data Repository work in the Online Journal of Public Health Informatics. This article specifically showcased the work of the Frontier Science team and highlights the importance of data sharing.
The C3PNO Virtual Data Repository (VDR) is a web-based interactive, searchable database available in the public domain at https://www.c3pno.org. The C3PNO VDR facilitates access to specimens from nine NIDA-funded cohorts. 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.
The C3PNO VDR is 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.
Reference: 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