At a virtual intersection in Chicago, where a top-ranked university, nationally-recognized hospital, and world-renowed children’s clinic meet, researchers are accustomed to the challenges of data sharing across secured networks.
Having spent a career investigating the safety of patients with epilepsy, Stephan Schuele, MD, MPH, associate professor of neurology and physical medicine and rehabilitation, wants to make that process as easy as walking across the proverbial street.
In building a first-of-its-kind network to address sudden unexplained death in epilepsy (SUDEP), which accounts for an estimated 20 percent of epilepsy-related deaths, Schuele is hoping to increase the availability of data available to researchers.
“SUDEP is the leading cause of unexpected death in epilepsy, and strategies to prevent it are lacking because they require the collaboration of several centers to recruit a sufficient patient cohort,” said Schuele, director of the Northwestern University Comprehensive Epilepsy Center. “Chicago already has an excellent network of collaborators at its epilepsy centers and the SUDEP.net project will create a HIPPA-compliant environment to facilitate even more development and collaboration in SUDEP research.”
The SUDEP network will provide researchers here, at the Ann & Robert H. Lurie Children’s Hospital of Chicago, Rush University Medical Center, University of Chicago, and Loyola University with the ability to upload and access de-identified patient information.
Set to launch this fall, SUDEP.net is being funded by the Danny Did Foundation, which recently was announced as the beneficiary of the 2013 Northwestern University Dance Marathon. In 2012, the event raised more than $1 million.
If the Chicago-based project is successful, Schuele plans to widen the scope to a national scale.
Nearly three million people in the U.S., and more than 50 million worldwide, are affected by epilepsy. The number of deaths caused by seizures annually is estimated to be upwards of 50,000. The Danny Did Foundation was established in 2010 by Chicagoans Mike and Marianne Stanton, who lost their four-year-old son, Danny, to SUDEP.
“SUDEP.net will also help with our educational mission by providing students and residents interested in the topic of epilepsy access to pilot projects,” Schuele said. “Just think about it, even though Children’s Hospital is now downtown, sharing data between hospitals is impossible because of the use of different networks. SUDEP.net solves this problem by offering data storage and access to a HIPPA-compliant dropbox.”