Preparing and Submitting Data Repository Datasets
The National Heart, Lung, and Blood Institute (NHLBI) has established a data repository consisting of the collected data from participants in numerous clinical trials and epidemiologic studies sponsored by the Institute. These datasets from well-characterized population samples represent rare and valuable scientific resources. In order to take full advantage of these resources and to maximize their research value, it is important that data collected with public funds be made available, under appropriate terms and conditions, to the largest possible number of qualified investigators in a timely manner. Data distribution procedures have been established and are administered by the NHLBI. These procedures require modification or elimination of data to protect participant privacy, and require that the recipient of the data sign a data distribution agreement and obtain an IRB approval from their institution prior to receipt of the data.