Data Sharing Redux… Use of the NHLBI Data Repository

Source: Coady SA, Mensah GA, Wagner EL, Goldfarb ME, Hitchcock DM, Giffen CA. Use of the National Heart, Lung, and Blood Institute Data Repository. NEnglJMed. 2017; 376:1849-1858.

The National Heart Lung and Blood Institute (NHLBI) began its data repository in 2000 to facilitate the sharing of clinical trial data and observational studies with the general scientific community. The data repository comprises deidentified, individual-level data sets from NHLBI supported studies. In the May 11, 2017, issue of NEJM, Coady and colleagues provide an in-depth analysis of data requests from the NHLBI repository from inception through May 2016. The rationale for their study was to elucidate the outcomes for the data requests, eg, utilization and associated publication of articles once clinical trial data have been released for wide sharing.
The results presented by Coady et al demonstrate “that release of clinical trial data for wide sharing can contribute to the scientific community in multiple ways, including increasing the transparency of findings, examining new hypothesis-generating questions, providing pilot data for grant submissions, testing statistical methods, performing meta-analyses, and developing prediction algorithms.”

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