The TSC Natural History database was started in 2006 and stores clinical data to record the impact of TSC on a person’s health over their lifespan. To date, over 2000 people have enrolled in the database and over 800 samples have been donated.
The biosamples and data about individuals who provided samples helps researchers discover biomarkers of TSC, test potential drug treatments, and determine why TSC is so different from person to person.
The project is funded by the TSC Alliance, United States. To date, there have been 13 Articles published using data from the database. This has contributed to our understanding of TSC in numerous areas.
The Biosample Repository and Natural History Database has the capacity to accept buccal samples (samples from the inside of the cheek) from people with TSC in Australia who would like to participate. The TSC Alliance will need to obtain medical records to enable data entry prior to shipping the buccal swab.
The swab will be mailed to participants, along with a prepaid return shipping label.
For more information, please see https://www.tscalliance.org/individuals-families/biosample-repository-and-natural-history-database/
If you are a health professional, please see https://www.tscalliance.org/researchers/biosample-repository/
To participate in this project please contact Gabrielle Rushing, PhD, Research Director for TSC Alliance [email protected]