Tuberous Sclerosis Alliance and Seizure Tracker™ Partner to Promote Data Sharing and Biosample Collection
Jun 19, 2020, 06:00 ET
SILVER SPRING, Md., June 19, 2020 /PRNewswire/ -- Today the Tuberous Sclerosis Alliance (TS Alliance) and Seizure Tracker™ announced a partnership to promote data sharing and biosample collection from people with tuberous sclerosis complex (TSC), a rare genetic condition that causes tumors to form in vital organs. TSC is also the leading genetic cause of both epilepsy and autism.
This partnership brings together two databases with robust historical data: the TS Alliance's Natural History Database (NHD), implemented in 2006, and Seizure Tracker's Data Share system, established in 2007. With more than 2,000 enrollees, the NHD captures clinical data to document the impact of TSC on a person's health over his or her lifetime. The Data Share system is designed to enable website and mobile diary users to link their personally reported data to partner organizations' managed databases. Joining patient-entered data collected during seizure events to data collected and curated in a clinical setting will enhance the value of all the data and provide insights previously unattainable.
"Combining the TS Alliance's Natural History Database and seizure outcome data from Seizure Tracker has the potential to change the way we think about and treat seizures in people living with tuberous sclerosis complex," says Robert Moss, Co-Founder and President of Seizure Tracker. "As the wealth of patient and clinically collected data grows, we will empower our research and physician community to improve care and ultimately change the course of TSC."
In addition to sharing data, both organizations will work together to highlight the opportunity for individuals with TSC to contribute to the TS Alliance's Biosample Repository, which stores samples of blood, DNA, and tissues scientists can use in their research. Further, the Waxlax Biosample Repository Collection Initiative, funded by Lorne and Heidi Waxlax, allows for collection of blood from the simplicity of a participant's home anywhere in the United States. These collected samples are then linked to clinical data in the NHD and self-reported Seizure Tracker data if users opt in to share with researchers. To help inform its users, SeizureTracker.com now includes a page dedicated to "Seizures and Tuberous Sclerosis Complex," where visitors can view data related to seizure types specific to Seizure Tracker users who self-report as having TSC.
"This partnership enables researchers to access data not previously accessible through the Natural History Database, including type and frequency of seizures and use of rescue medications," explains Kari Luther Rosbeck, President and CEO of the TS Alliance. "Connecting these data directly incorporates the voices of people affected by TSC into research, continuing our culture of collaboration at the TS Alliance."
About Seizure Tracker
Founded in 2007 by parents of a child suffering from daily seizures, Seizure Tracker provides a collection of web, mobile and voice interaction tools for people living with seizures to collect epilepsy related information and easily share that data with their doctors. Reports generated on the Seizure Tracker system provide extensive data visualizations comparing therapies against seizure activity changes while highlighting trends. With a strong connection to the epilepsy patient, physician and research communities, Seizure Tracker has grown into the largest collection of seizure and related therapy data in the world, opening new doors to data driven research and effectively changing the way we think about managing seizures. For more information about the Seizure Tracker system visit SeizureTracker.com or email [email protected].
About the Tuberous Sclerosis Alliance
Established in 1974, the Tuberous Sclerosis Alliance is an internationally recognized nonprofit organization dedicated to finding a cure for tuberous sclerosis complex while improving the lives of those affected. The organization accomplishes this by developing programs, support services and resource information; stimulating and sponsoring research; and creating and implementing public and professional education programs designed to heighten awareness of the disease. For more information, visit tsalliance.org or email [email protected].
Contact:
Jaye Isham
Vice President, Communications Strategy
Tuberous Sclerosis Alliance
301.562.9890
[email protected]
SOURCE Tuberous Sclerosis Alliance
