201901 Data Sharing for Demographic Research Infrastructure Program

Program seeks Council approval for an initiative titled “Data Sharing for Demographic Research Infrastructure Program” (DSDR). In response to NIH’s move to broader data sharing policies, including achieving reproducibility and replicability of research, we propose providing resources to support an archive that will provide cost-effective, accessible data sharing that meets international standards for data and metadata documentation, and provides adequate safeguards for maintaining confidentiality.

To continue to archive, document, and disseminate data in population science and allied areas, it is necessary to have an archive available for investigators to deposit their data once the grant that generated the data has ended. To maximize use of existing data and serve both data depositors and users, this archive must have the capacity to provide high-quality documentation that is easy to access and use; process and clean data, documenting any data or structural errors; and implement practices and policies ensuring the protection of human subjects, including having the capacity to identify data sets that require restricted access. Also important are the provision of technical assistance and training to users on best practices on depositing, accessing, manipulating, and analyzing the archive’s data, and reaching out to potential users whose research would benefit from access to DSDR.

Continued support for a data sharing archive is necessary because the demand for data sharing continues to exist among both data producers and users The continued demand for the services provided through DSDR are demonstrated by performance during the last funding period: 74 projects have been archived and disseminated; DSDR data sets have been downloaded 499,583 times; and data have been used by 96,834 unique users overall, 32,450 of whom have downloaded data files. Note: Because most population dynamics data are population-representative, many of the data sets archived and disseminated through this initiative will capture the diversity of the U.S. population.

The goal of this initiative is to make available all data collected and/or produced through support by NICHD in the area of population dynamics and allied disciplines quickly and easily available to the scientific community. A secondary goal is to make available data collected/produced with support from sources other than NICHD, but useful to researchers working within the scientific scope of the NICHD Population Dynamics Branch.

This initiative aligns with the NICHD Vision of “finding creative and more efficient ways to analyze, store, disseminate, and share data—both new and from older studies—widely and effectively,” by creating “centralized, accessible, and intuitively organized electronic warehouses of clinical research” that “protect the confidentiality and privacy of research participants,” and that contain data sets that “capture the diversity of the U.S. population,” with the ultimate goal of “chang[ing] the predominant model for data use to one of open access.”

The DSDR program aligns with Population Dynamics Branch priorities by making the data necessary to for multi-level, longitudinal research on health and development across the life course easily and inexpensively available to researchers, from undergraduates to full professors, across the nation and around the world.

Program Contact

Rebecca Clark
Population Dynamics Branch (PDB)

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