Ongoing TSC Clinical Trials Archives

TSC-STEPS Trial

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

Ongoing Early Intervention and Autism trials

See below for ongoing trials....

Transition Readiness Survey

Dr. Amy Paller and Northwestern University/Ann & Robert H. Lurie Children’...

Rainbow Study (Remote Assessment an Intervention for Behavior Problems in Kids with TSC)

The Remote Assessment and Intervention for Behavior Problems in Kids With TSC (R...

Ongoing Sleep Studies

See below for ongoing trials....

Understanding caregiver experiences of sleep management difficulties in individuals with tuberous sclerosis complex

Email m.shabetai@bham.ac.uk to participate in this study....

Caregiver Experience Survey for Individuals with TSC

Global Perspectives, specialists in recruiting caregivers and patients for scien...

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 develop...

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 Compl...

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 develop...

Current Clinical Trials

See below for ongoing clinical trials. For a full list of clinical trials go to ...

Ongoing Biosample Studies

See below for ongoing studies....

Alzheimer’s in TSC study

Tuberous Sclerosis Complex (TSC) is a genetic condition due to mutations in TSC1...

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 infectio...

TSC-STEPS trial

TSC-STEPS is a study to learn more about a drug known as Sirolimus and determine...

Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program

Bcureful’s Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Pr...

TSC MRI Study

Why are we doing this study? Researchers at Johns Hopkins are seeking participan...

TSC MRI Study

Why are we doing this study? Researchers at Johns Hopkins are seeking participan...

Transition Readiness Survey

Dr. Amy Paller and Northwestern University/Ann & Robert H. Lurie Children’...

Alzheimer’s in TSC Study

Tuberous Sclerosis Complex (TSC) is a genetic condition due to mutations in TSC1...

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 infectio...

Baby Talk in TSC

Why are we doing this study? Our team is investigating how TSC impacts a baby’...

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

The TSC Alliance has created a Self-Report Portal (SRP) to collect information c...

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 Arti...

Transition Readiness Survey

Dr. Amy Paller and Northwestern University/Ann & Robert H. Lurie Children’...

Alzheimer’s in TSC Study

Tuberous Sclerosis Complex (TSC) is a genetic condition due to mutations in TSC1...

Ongoing Epilepsy Trial

See below for the upcoming trial....

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 infectio...

Transition Readiness Survey

Dr. Amy Paller and Northwestern University/Ann & Robert H. Lurie Children’...

Alzheimer’s in TSC Study

Tuberous Sclerosis Complex (TSC) is a genetic condition due to mutations in TSC1...

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 infectio...

Transition Readiness Survey

Dr. Amy Paller and Northwestern University/Ann & Robert H. Lurie Children’...

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 infectio...

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 infectio...

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 infectio...

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 infectio...

Ongoing Epilepsy Trial

See below for the upcoming trial....

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 infectio...

Ongoing Genetic Study

See below for the ongoing study....

Ongoing Biosample Studies

See below for ongoing studies....

Ongoing Facial Angiofibroma Trial

See below for the ongoing trial....

Ongoing Epilepsy Trial

See below for the upcoming trial....

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 infectio...

Ongoing Genetic Study

See below for the ongoing study....

Ongoing Quality of Life Study for Adults with TSC

See below for ongoing study....

Ongoing Biosample Studies

See below for ongoing studies....

Ongoing Facial Angiofibroma Trial

See below for the ongoing trial....

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 infectio...

Ongoing Quality of Life Study for Adults with TSC

See below for ongoing study....

Ongoing Genetic Study

See below for the ongoing study....

Ongoing Biosample Studies

See below for ongoing studies....

Ongoing Facial Angiofibroma Trial

See below for the ongoing trial....

Ongoing Epilepsy Trial

See below for the upcoming trial....

Ongoing Genetic Study

See below for the ongoing study....

Ongoing Biosample Studies

See below for ongoing studies....

Ongoing Facial Angiofibroma Trial

See below for the ongoing trial....

Ongoing Epilepsy Trial

See below for the upcoming trial....

Ongoing Genetic Study

See below for the ongoing study....

Ongoing Biosample Studies

See below for ongoing studies....

Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program

NORD’s Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Progra...

Currently Recruiting Sibling Participants

Do you have a brother or sister with autism? Share your voice. Spread more aware...

Global clinical study evaluating topical rapamycin treatment for facial angiofibroma in patients with tuberous sclerosis complex

This study of a new cream for the treatment of mild to moderate facial angiofibr...

Global clinical study evaluating topical rapamycin treatment for facial angiofibroma in patients with tuberous sclerosis complex

This study of a new cream for the treatment of mild to moderate facial angiofibr...

Ongoing Biosample Studies

See below for ongoing studies....

Ongoing Genetic Study

See below for the ongoing study....

Quality of Life Study – Checklist for adults with TSC (CHAT-TSC)

Are you an adult with TSC or a parent/caregiver of a dependent adult with TSC? A...

Ongoing Genetic Study

See below for the ongoing study....

Ongoing Biosample Studies

See below for ongoing studies....

Ongoing Facial Angiofibroma Trials

See below for ongoing trials....

Epilepsy Trial

Adjunctive Ganaxolone Treatment (Part A) in TSC Followed by Long-term Treatment ...

Transition of Epilepsy Care Questionnaire

Open to adults or caregivers of a child or dependent adult with TSC and seizures...

Tuberous Sclerosis Research Opportunity

Please help us better understand factors that impact the decision to unde...

Quality of Life Study – Checklist for adults with TSC (CHAT-TSC)

Are you an adult with TSC or a parent/caregiver of a dependent adult with TSC? A...

Epilepsy Trial

Adjunctive Ganaxolone Treatment (Part A) in TSC Followed by Long-term Treatment ...

Behavioral Research – Open to families with children with and without TSC

Tell us about your child’s emotional outbursts...

Ongoing Genetic Studies

See below for ongoing studies....

Ongoing Biosample Studies

See below for ongoing studies....

Ongoing Facial Angiofibroma Trials

See below for ongoing trials....

Tuberous Sclerosis Research Opportunity

Please help us better understand factors that impact the decision to undergo epi...

Behavioral Research – Open to families with children with and without TSC

Tell us about your child’s emotional outbursts...

Phenotypic Variability in Tuberous Sclerosis Complex (TSC)

Dr. Narayanan and colleagues at the Translational Genomics Research Institute (T...

Ongoing Biosample Studies

See below for ongoing studies....

Ongoing Facial Angiofibroma Trials

See below for ongoing trials....

Tuberous Sclerosis Research Opportunity

Please help us better understand factors that impact the decision to undergo epi...

Phenotypic Variability in Tuberous Sclerosis Complex (TSC)

Dr. Narayanan and colleagues at the Translational Genomics Research Institute (T...

Ongoing Biosample Studies

See below for ongoing studies....

Ongoing Facial Angiofibroma Trials

See below for ongoing trials....

Ongoing Epilepsy Trials

See below for ongoing trials....

Are you an Adult with TSC or a Caregiver of an Adult with TSC?

Dr. Agnies Van Eeghen and her research team at Erasmus Medical Centre in The Net...

Phenotypic Variability in Tuberous Sclerosis Complex (TSC)

Dr. Narayanan and colleagues at the Translational Genomics Research Institute (T...

SPARK for Autism Research Study, Boston Children’s Hospital

Boston Children’s Hospital would like to invite individuals of all ages diagno...

Baby Brain Imaging and Behavior Study (Baby BIBS)

Researchers at the UCLA Center for Autism Research and Treatment (CART) are look...

Dr. David Kwiatkowski at the Brigham & Women’s Hospital in Boston Seeks Biospecimens for LAM/TSC Research

His research involves analyzing left over fluid and tissue samples from chest an...

Researcher Seeking Donation of Tissue Samples from Your Surgery

Dr. Elizabeth (Lisa) Henske’s laboratory has a new project to develop cellular...

Dose-Ranging Efficacy and Safety Study of Topical Rapamycin Cream for Facial Angiofibroma Associated with Tuberous Sclerosis Complex (TSC)

A new clinical trial for individuals with TSC and facial angiofibromas who are 6...

Clinical Trial for Individuals Diagnosed with Tuberous Sclerosis Complex (TSC) and Cutaneous Angiofibromas

We are currently conducting a clinical trial for individuals diagnosed with TSC ...

Tuberous Sclerosis Research Opportunity – Please Help Us Better Understand Factors That Impact the Decision to Undergo Epilepsy Surgery

We have a brief survey (20 minutes) addressing caregiver satisfaction with epile...

Efficacy and Safety of Lacosamide as Adjunctive Therapy in Subjects ≥1 Month to <4 Years with Partial-onset Seizures

Description: UCB Biosciences, Inc. is conducting a clinical trial to evaluate th...

Engage Therapeutics Clinical Trial

Engage Therapeutics is a small biotech company working to improve life with epil...

Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program

NORD’s Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Progra...

Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT Trial)

Enrollment still open! Where: TSC Clinical Research Consortium sites at Boston C...

SPARK for Autism Research Study, Boston Children’s Hospital

Boston Children’s Hospital would like to invite individuals of all ages diagno...

Are you an adult with TSC or a caregiver of an adult with TSC?

Dr. Agnies Van Eeghen and her research team at Erasmus Medical Centre in The Net...

Baby Brain Imaging and Behavior Study (Baby BIBS)

Researchers at the UCLA Center for Autism Research and Treatment (CART) are look...

Dr. David Kwiatkowski at the Brigham & Women’s Hospital in Boston Seeks Biospecimens for LAM/TSC Research

His research involves analyzing left over fluid and tissue samples from chest an...

Researcher Seeking Donation of Tissue Samples from Your Surgery

Dr. Elizabeth (Lisa) Henske’s laboratory has a new project to develop cellular...

Dose-Ranging Efficacy and Safety Study of Topical Rapamycin Cream for Facial Angiofibroma Associated with Tuberous Sclerosis Complex (TSC

A new clinical trial for individuals with TSC and facial angiofibromas who are 6...

Tuberous Sclerosis Research Opportunity – Please Help Us Better Understand Factors That Impact the Decision to Undergo Epilepsy Surgery

We have a brief survey (20 minutes) addressing caregiver satisfaction with epile...

Efficacy and Safety of Lacosamide as Adjunctive Therapy in Subjects ≥1 Month to <4 Years with Partial-onset Seizures

Description: UCB Biosciences, Inc. is conducting a clinical trial to evaluate th...

Engage Therapeutics Clinical Trial

Engage Therapeutics is a small biotech company working to improve life with epil...

Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program

NORD’s Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Progra...

Phenotypic Variability in Tuberous Sclerosis Complex (TSC)

Dr. Narayanan and colleagues at the Translational Genomics Research Institute (T...

Clinical Trial for Individuals Diagnosed with Tuberous Sclerosis Complex (TSC) and Cutaneous Angiofibromas

We are currently conducting a clinical trial for individuals diagnosed with TSC ...

Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT Trial)

Enrollment still open! Where: TSC Clinical Research Consortium sites at Boston C...

Engage Therapeutics Clinical Trial

Engage Therapeutics is a small biotech company working to improve life with epil...

Phenotypic Variability in Tuberous Sclerosis Complex (TSC)

Dr. Narayanan and colleagues at the Translational Genomics Research Institute (T...

Baby Brain Imaging and Behavior Study (Baby BIBS)

Researchers at the UCLA Center for Autism Research and Treatment (CART) are look...

Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program

What is the purpose of this program? NORD’s Tuberous Sclerosis Complex Travel ...

Dose-Ranging Efficacy and Safety Study of Topical Rapamycin Cream for Facial Angiofibroma Associated with Tuberous Sclerosis Complex (TSC)

A new clinical trial for individuals with TSC and facial angiofibromas who are 6...

Clinical Trial for Individuals Diagnosed with Tuberous Sclerosis Complex (TSC) and Cutaneous Angiofibromas

We are currently conducting a clinical trial for individuals diagnosed with TSC ...

Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT Trial)

Enrollment goal might be reached by Sept 2019...

Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program

What is the purpose of this program? NORD’s Tuberous Sclerosis Complex Travel ...

Phenotypic Variability in Tuberous Sclerosis Complex (TSC)

Dr. Narayanan and colleagues at the Translational Genomics Research Institute (T...

SPARK for Autism Research Study, Boston Children’s Hospital

Boston Children’s Hospital would like to invite individuals of all ages diagno...

Baby Brain Imaging and Behavior Study (Baby BIBS)

Researchers at the UCLA Center for Autism Research and Treatment (CART) are look...

Dr. David Kwiatkowski at the Brigham & Women’s Hospital in Boston Seeks Biospecimens for LAM/TSC Research

His research involves analyzing left over fluid and tissue samples from chest an...

Researcher Seeking Donation of Tissue Samples from Your Surgery

Dr. Elizabeth (Lisa) Henske’s laboratory has a new project to develop cellular...

Clinical Trial for individuals diagnosed with Tuberous Sclerosis Complex (TSC) and cutaneous angiofibromas

We are currently conducting a clinical trial for individuals diagnosed with TSC ...

Efficacy and Safety of Lacosamide as Adjunctive Therapy in Subjects ≥1 Month to <4 Years with Partial-onset Seizures

Description: UCB Biosciences, Inc. is conducting a clinical trial to evaluate th...

Engage Therapeutics Clinical Trial

Engage Therapeutics is a small biotech company working to improve life with epil...

Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT Trial)

Enrollment goal might be reached by Sept 2019...

Clinical Trial for Individuals Diagnosed with Tuberous Sclerosis Complex (TSC) and Cutaneous Angiofibromas (Valid through June 2019)

We are currently conducting a clinical trial for individuals diagnosed with TSC ...

SPARK for Autism Research Study, Boston Children’s Hospital (Valid through March 2020)

Boston Children’s Hospital would like to invite individuals of all ages diagno...

Researcher Seeking Donation of Tissue Samples from Your Surgery (Valid through June 2020)

Dr. Elizabeth (Lisa) Henske’s laboratory has a new project to develop cellular...

Phenotypic Variability in Tuberous Sclerosis Complex (TSC) (Study Valid through September 1, 2021)

Dr. Narayanan and colleagues at the Translational Genomics Research Institute (T...

Dr. David Kwiatkowski at the Brigham & Women’s Hospital in Boston Seeks Biospecimens for LAM/TSC Research

His research involves analyzing left over fluid and tissue samples from chest an...