The NHLBI Limited Access Dataset Program

The National Heart, Lung, and Blood Institute (NHLBI) has supported data collection from participants in numerous clinical trials and epidemiologic studies. These data from well-characterized population samples constitute an important scientific resource. It is the view of the NHLBI that their full value can only be realized if they are made available, under appropriate terms and conditions consistent with the informed consent provided by individual participants, in a timely manner to the largest possible number of qualified investigators.

Data sets distributed under this policy include only “limited access data”, i.e., records with personal identifiers and other variables that might enable individual participants to be identified, such as outliers, dates, and study sites, removed or otherwise modified. Because it may still be possible to combine the limited access data with other publicly available data and thereby determine with reasonable certainty the identity of individual participants, these data sets are not anonymous, and only provided to investigators who agree in advance to adhere to established policies for distribution.

Limited access data sets are available for NHLBI studies supported by contract and for selected studies supported by cooperative agreements or other grants.