TSC Matters

Archive for the ‘Ongoing TSC Clinical Trials’ Topic

TSC and Emotion Dysregulation Study for Children 8 to 18 years old and Their Caregivers

What A study to learn more about the effectiveness of a Tuberous Sclerosis Complex (TSC) treatment program called “Regulating Together.” This study will be primarily conducted remotely. There will be sessions to complete cognitive/behavioral testing, as well as five weeks of group session that will meet twice weekly for both children and parents/caregivers. This will last approximately 30 weeks from start to finish. (Please note that this is a research study and not treatment). Who Children 8 to 18 years old with TSC and emotion dysregulation One or two parents/caregivers who provide care to the participant Pay Participants will receive... Read More

Basimglurant, a new mechanism of action for control of seizures in tuberous sclerosis complex?

Do you or your loved one suffer from epileptic seizures? Noema Pharma is developing basimglurant, a drug with a new mechanism of action and a potential for treatment of seizures associated with TSC. Children older than 5 years, adolescents and adults up to 30 years of age may be able to participate in the study, if their seizures associated with TSC are not sufficiently controlled by their current treatment. The Galene study is currently open for enrollment in the US, Israel, Turkey and Australia. Further sites are opening in the UK, Spain, Italy, Poland and India. To learn more about... Read More

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. 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. Read More


TSC-STEPS is a study to learn more about a drug known as Sirolimus and determine if it can prevent seizures and epilepsy in children diagnosed with TSC. The study is currently enrolling infants diagnosed with TSC who are at risk of developing epilepsy. Learn more Listen to a recent episode of TSC Now featuring Darcy Krueger, MD, PhD, Principal Investigator for the TSC-STEPS trial. Read More