There are two options for obtaining access to data collected by the Sleep Heart Health Study, (SHHS) depending on the scientific question to be addressed and the amount and level of data needed. One option is to access a limited data base developed by the Reading Center at Case Western Reserve University; the second is to establish a formal collaboration with the SHHS in order to access the full data set. The study investigators have received many requests for polysomnographic recordings, often made for the purpose of testing the signal-reading algorithms. For persons seeking access to a limited number of polysomnograms, along with some relevant demographic and health data, the Reading Center has created an interactive website (link) that will allow you to select and download the needed data. For those seeking access to the full data or seeking to address scientific questions that require access to individual-level data, it will be necessary to follow the procedures for entering into a collaboration with the Sleep Heart Health Study. To learn more about these procedures, click on the following link http://www.jhucct.com/shhsnew/details/collaborate/default.htm.

Q. What data are available from the Sleep Heart Health Study?

A. The Sleep Heart Health Study is a prospective cohort study of sleep disordered breathing and risk for cardiovascular diseases. The cohort was originally enrolled in the mid-1990s from existing epidemiological studies. At that time, 6,441 participants were studied at a number of different investigative sites across the country. The participants were invited to return for a second polysomnogram five years later. At both visits, information was collected on general health, sleepiness, and cardiovascular disease. For in-depth review of the information collected, please go to http://www.jhucct.com/shhsnew/details/studydoc.htm.

Q. What data are available?

A. Depending on the scientific question to be addressed, the data available from the Sleep Heart Health Study ranged from pre-selected samples of polysomnograms that can be accessed through the Reading Center’s website to the full, individual-level dataset.

Q. What are the requirements with regard to human subjects considerations?

A. The Sleep Heart Health Study is approved by the Institutional Review Boards at each of the participating institutions. Arrangements have also been made for providing data access. Each collaborating investigator needs to obtain the required approvals from their own Institutional Review Boards.

Q. Is my use of Sleep Heart Health Study data restricted?

A. The study requires that each collaborating investigator complete a “Data Distribution Agreement”. The form to be completed depends on whether data will be accessed through the Reading Center’s website and database of polysomnograms, or via a full collaboration with the Sleep Heart Health Study. The use of the Sleep Heart Health Study data is restricted to the specified purpose and the data cannot be further shared.

Q. Are there costs for obtaining Sleep Heart Health Study data?

A. Whether collaborating investigators need to pay for the cost of data acquisition depends on the nature of the request. The Reading Center has developed a web-based data-sharing system with support from the NHLBI and there are no costs for accessing and using this website. However, costs may be incurred for the development of more complex databases involving the individual-level covariate data. Persons submitting grant applications that will be based around the Sleep Heart Health Study need to include these costs in their request. We ask that investigators work with the Sleep Heart Health Study Coordinating Center in advance of submission of grant applications to assure that proper funding will be requested.