Librarians and Scientists Partner to Address Data Management: Taking Collaboration to the Next Level.

PURPOSE: This study looks at the changing way in which the Information Services Office (ISO) at the National Institute of Standards and Technology (NIST) provides services to NIST scientific and technical staff throughout their research and publishing cycles. These services include the more traditional services of a research library as well as publishing NIST technical reports and The Journal of Research of NIST, and preserving and exhibiting scientific instruments and other artifacts. ISO has always prided itself on having a close relationship with its customers, providing a high level of service, and developing new services to stay in front of NIST researcher needs. Through a concerted, strategic effort since the late 1990s, ISO has developed and promoted relationships with its key customers through its Lab Liaison Program. DESIGN/METHODOLOGY/APPROACH: This paper discusses the relationship ISO has developed with the Office of Data and Informatics (ODI), how this relationship was forged, and how this collaboration will serve as a model for working with the other labs and programs at NIST. It will also discuss the risks and opportunities of this new collaborative service model, how ISO positioned itself to become an equal partner with ODI in the exploration of solutions to data management issues, and the benefits of the relationship from ODI's perspective. FINDINGS: A pattern of strategic changes to the services and activities offered by the Lab Liaison program has put ISO in the position to collaborate as peers with researchers at NIST. ORIGINALITY/VALUE: This study provides an overview of how ISO made strategic decisions to incorporate non-traditional services to support data management at NIST.

NCBI's Database of Genotypes and Phenotypes: dbGaP.

The Database of Genotypes and Phenotypes (dbGap, http://www.ncbi.nlm.nih.gov/gap) is a National Institutes of Health-sponsored repository charged to archive, curate and distribute information produced by studies investigating the interaction of genotype and phenotype. Information in dbGaP is organized as a hierarchical structure and includes the accessioned objects, phenotypes (as variables and datasets), various molecular assay data (SNP and Expression Array data, Sequence and Epigenomic marks), analyses and documents. Publicly accessible metadata about submitted studies, summary level data, and documents related to studies can be accessed freely on the dbGaP website. Individual-level data are accessible via Controlled Access application to scientists across the globe.

Using PhenX measures to identify opportunities for cross-study analysis.

The PhenX Toolkit provides researchers with recommended, well-established, low-burden measures suitable for human subject research. The database of Genotypes and Phenotypes (dbGaP) is the data repository for a variety of studies funded by the National Institutes of Health, including genome-wide association studies. The dbGaP requires that investigators provide a data dictionary of study variables as part of the data submission process. Thus, dbGaP is a unique resource that can help investigators identify studies that share the same or similar variables. As a proof of concept, variables from 16 studies deposited in dbGaP were mapped to PhenX measures. Soon, investigators will be able to search dbGaP using PhenX variable identifiers and find comparable and related variables in these 16 studies. To enhance effective data exchange, PhenX measures, protocols, and variables were modeled in Logical Observation Identifiers Names and Codes (LOINC® ). PhenX domains and measures are also represented in the Cancer Data Standards Registry and Repository (caDSR). Associating PhenX measures with existing standards (LOINC® and caDSR) and mapping to dbGaP study variables extends the utility of these measures by revealing new opportunities for cross-study analysis.

The NCBI dbGaP database of genotypes and phenotypes.

The National Center for Biotechnology Information has created the dbGaP public repository for individual-level phenotype, exposure, genotype and sequence data and the associations between them. dbGaP assigns stable, unique identifiers to studies and subsets of information from those studies, including documents, individual phenotypic variables, tables of trait data, sets of genotype data, computed phenotype-genotype associations, and groups of study subjects who have given similar consents for use of their data.