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TSC Matters

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.

Participate in the TSC Self-Report Portal – New Survey Available

The TSC Alliance has created a Self-Report Portal (SRP) to collect information called Patient-Reported Outcomes (PROs). PROs are any report of the status of a person’s health condition that comes directly from the person, without interpretation of the person’s response by a clinician or anyone else. In the case of individuals with TSC that are unable to speak or report for themselves, PROs can be submitted by their parent, guardian, or caregiver. The TSC Alliance is collecting information from caregivers of individuals with TSC that have epilepsy. The goal is to evaluate the relationship between epilepsy and TSC Associated Neuropsychiatric...Read More

Participants Needed for a Study Using AI to Predict the Onset of Seizures

Do you or your loved one suffer from uncontrolled epileptic seizures? Using Artificial Intelligence, scientists at Florida International University are working on a non-invasive solution that could predict the onset of a seizure and improve the quality of life of patients and their families. The FIU research team would like to speak with you to collect information on how they can improve the quality of your life with their technology.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. 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

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

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

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