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TSC Matters

Archive for the ‘Ongoing TSC Clinical Trials’ Topic

TSC MRI Study

Why are we doing this study? Researchers at Johns Hopkins are seeking participants for an MRI research study where information will be collected to develop a new non-invasive imaging technique that will help us understand the biochemical factors affecting seizure activity and cognition in TSC. What: MRI scan to take pictures of your brain (approximately 60 minutes). For participants with TSC, a separate session of up to 2 hours for a neuropsychological test. Who can join? You are eligible if: You are a healthy volunteer You are a patient with TSC You are between the ages 6-30 years old Compensation:... 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

Baby Talk in TSC

Why are we doing this study? Our team is investigating how TSC impacts a baby’s speech. The study is focused on examining the vocalizations and early language of infants with TSC. What: In this study, we will obtain and analyze recordings of your child’s babbling and speech. The majority of the recordings will be obtained in your home using a small recorder placed in your child’s clothing (home recordings). In some cases, recordings will be obtained in an office/laboratory setting either at the University of Memphis or at Le Bonheur Children’s Hospital. We will also give speech and language tests,... Read More

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