TSC Matters is a bimonthly e-newsletter featuring news from the TS Alliance, TSC research updates, upcoming TS Alliance events and more! Subscribe to stay up-to-date on everything happening at the TS Alliance.
Transition Readiness Survey
Dr. Amy Paller and Northwestern University/Ann & Robert H. Lurie Children’s Hospital of Chicago would like to invite you to participate in a research study on the readiness to transition to an adult model of health care. This study involves completion of an online survey and more information can be found below. If you are a parent/caregiver of or an adolescent between 14 and 22 years old with tuberous sclerosis or another genetic chronic skin condition, please consider participating in our survey study on transition readiness. The survey is for the adolescent to take themselves. A parent/caregiver can help the...Read More
Ongoing Biosample Studies
See below for ongoing studies.Read More
Ongoing Early Intervention and Autism Trials
See below for ongoing trials.Read More
Alzheimer’s in TSC Study
Tuberous Sclerosis Complex (TSC) is a genetic condition due to mutations in TSC1 or TSC2 commonly diagnosed in the first few years of life. Advances in TSC research has allowed TSC patients to live well beyond the age of 50. Subsequently, many TSC patients note brain function changes such as memory difficulties or problems learning new computer programs beginning in their mid-to-late 40’s. A research group at Duke University began characterizing these brain function changes in 2018. They believe that these changes may represent the early stages of a neurodegenerative condition. These researchers are conducting a 2-year study called “Tuberous...Read More
Ongoing Epilepsy Trial
See below for the upcoming trial.Read More
Have You or Your Loved One with TSC Been Diagnosed with COVID-19?
The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information to help determine how medications such as everolimus (Afinitor®, Zortress®) or sirolimus (Rapamune®) and TSC conditions affect the risk of getting COVID-19 and its severity.Read More