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.