DATA AND SPECIMEN HUB (DASH)

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The benefits of data sharing are well-established. A growing body of evidence shows that when data are made accessible, they are frequently reused by other researchers to the benefit of all. For example, two recent studies found that between 15 and 20 percent of datasets archived in a public repository are reused (Navar et al., 2016; Piwowar et al., 2013) and that publications where the data were made available through a public repository received more citations than similar studies where the data were not made available (Piwowar et al., 2013; Piwowar et al., 2007). A recent analysis of the reuse of clinical trial data made available through a centralized data repository highlights that data sharing can benefit the scientific community in a variety of ways including testing new research questions or hypotheses, testing statistical methods, performing meta-analyses, and developing predictive algorithms (Coady et al., 2017). Towards these ends the Maternal and Pediatric Infectious Disease Branch at NICHD has made one of its priorities the archiving of data, and specimens when available, from HIV/AIDS studies supported by NICHD, in the NICHD DASH system (https://dash.nichd.nih.gov/). Launched in 2015, DASH addresses many of the challenges that have historically limited data sharing. DASH provides a platform to share data from completed studies and it is ready to accept data as soon as the data are ready for dissemination. In doing so it provides investigators with another mechanism to meet the data sharing requirements laid out in the NIH Data Sharing Policy (Final NIH Statement on Sharing Research Data, 2003). DASH acts as a data lake, accepting data in a variety of structures and formats. In accordance with FAIR principles (Wilkinson et al., 2016), all studies archived in DASH are annotated with metadata tags to maximize their findability. Users can locate studies and study artifacts archived in DASH using a keyword semantic search or through the study catalog which allows users to browse by topic, study type or life stage. Each study archived in DASH contains a study overview page that includes links to related studies, such as precursor studies or sub-analyses, with available datasets archived in DASH or another external repository. DASH also ensures data are accessible by making the process for obtaining data clear, fair and transparent. Towards this end, DASH publishes the NICHD DASH Data Use Agreement on its website along with a tutorial on the process of requesting data from DASH. To date, exactly half of the 42 studies in DASH are HIV-related. These range from epidemiologic studies (NISDI), studies from the ATN network, and data from individual trials (HPTN 040). In addition, numerous planned submissions in the future will be from other HIV-related studies (ATN, PHACS, PROMOTE) so that approximately 50% of the activity of DASH should continue to be HIV-related for the foreseeable future. The studies in DASH already and planned for deposit in the future all cover the high priorities for AIDS research as defined by OAR. Importantly, because secondary analyses of such studies are often a major part of career development for trainees and junior faculty, this effort also addresses OAR’s research training priority.