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All 20 Tuberous Sclerosis trials and their US sites
Enter your ZIP code above to sort them by how far their nearest open site is from you.
- TSC Biosample Repository and Natural History DatabaseMost sites in Texas, California and MassachusettsRecruitingNational Tuberous Sclerosis Association23US sites
16 states - Familial Investigations of Childhood Cancer PredispositionOnly in TennesseeRecruitingSt. Jude Children's Research Hospital1US site
- Regulating Together in Tuberous Sclerosis ComplexOnly in OhioRecruitingAges 8-17Children's Hospital Medical Center, Cincinnati1US site
- Role of Genetic Factors in the Development of Lung DiseaseOnly in MarylandRecruitingAges 2-90National Heart, Lung, and Blood Institute (NHLBI)1US site
- Study of Skin Tumors in Tuberous SclerosisOnly in MarylandRecruitingAges 18-90National Heart, Lung, and Blood Institute (NHLBI)1US site
- Study of the Disease Process of LymphangioleiomyomatosisOnly in MarylandRecruitingAges 16-100National Heart, Lung, and Blood Institute (NHLBI)1US site
- Tuberous Sclerosis Complex and Lymphangioleiomyomatosis Pregnancy Registry (TSC-LAM Registry)Only in OhioRecruitingDavid M. Ritter1US site
- A Smart Phone Application to Improve Adoption of the 2024 Kidney Disease Improving Global Outcomes (KDIGO) Chronic Kidney Disease (CKD) GuidelinesRecruitingAges 16-30St. James's Hospital, IrelandNo US site yet
- Efficacy and Safety of Rapamycin Versus Vigabatrin in the Prevention of Tuberous Sclerosis Complex Symptoms in InfantsRecruitingPhase 2/3Ages 4 Weeks-16 WeeksKatarzyna KotulskaNo US site yet
- Genetic Bases of Neuroendocrine Neoplasms in Mexican PatientsRecruitingAges 18+Universidad Nacional Autonoma de MexicoNo US site yet
- GROWing Up With Rare GENEtic SyndromesRecruitingAges 18+dr. Laura C. G. de Graaff-HerderNo US site yet
- National Registry of Rare Kidney DiseasesRecruitingUK Kidney AssociationNo US site yet
- Observational, Retrospective, Multicenter, Nonprofit Study on the Prevalence of Renal Involvement in Pediatric Patients With Tuberous SclerosisRecruitingUp to age 17IRCCS Azienda Ospedaliero-Universitaria di BolognaNo US site yet
- Periodontal Disease in Rare Renal Disorders (PERIO-RA-RE)RecruitingAges 18+Stefan LujinschiNo US site yet
- Placebo Controlled Study to Assess the Efficacy and Safety of Rapamycin in Drug Resistant Epilepsy Associated With Tuberous Sclerosis ComplexRecruitingPhase 3Ages 3 Months-50Katarzyna KotulskaNo US site yet
- Qualitative Study in Patients With Genodermatoses and Healthcare Professionals on Reproductive CounsellingRecruitingMaastricht University Medical CenterNo US site yet
- Safety, Tolerability, and Pharmacokinetics of SVG103 (Paxalisib) in Focal Cortical Dysplasia Type II (FCD-II), Tuberous Sclerosis Complex (TSC) or Hemimegalencephaly (HME)RecruitingPhase 1/2Ages 18-65SovargenNo US site yet
- Sapu003 in Advanced mTOR-sensitive Solid TumorsRecruitingPhase 1Ages 18+SAPU NANO (US)No US site yet
- Sertraline vs. Placebo in the Treatment of Anxiety in Children and AdoLescents With NeurodevelopMental DisordersRecruitingPhase 2Ages 8-17Holland Bloorview Kids Rehabilitation HospitalNo US site yet
- Treatment With Full-spectrum Cannabis Extract of Refractory Epilepsy Associated With Tuberous Sclerosis Complex (TSC)RecruitingPhase 3Ages 2-65Oils4CureNo US site yet
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Who runs the Tuberous Sclerosis trials in the US, and what stage they are in
None of the 7 Tuberous Sclerosis trials with a US site is in Phase 3, the last stage before a company can ask the FDA for approval. The remaining 7 have no drug phase, such as studies that follow people over time or test a device or a way of giving care. Universities, hospitals, foundations and government groups run all of them, with no company leading one. National Heart, Lung, and Blood Institute (NHLBI) runs the most, with 3. The most recently listed one first appeared on ClinicalTrials.gov on December 7, 2023.
Tuberous Sclerosis trials in the US, state by state
Of the 7 Tuberous Sclerosis trials with a US site, 6 accept children under 18. Their open sites are in 16 states, most often Maryland, Ohio and Tennessee. A trial counts once in each state where it has an open site, and some trials accept both children and adults.
Show the other 6 states
US hospitals running the most Tuberous Sclerosis trials
Centers that run trials for a rare condition often see more people with it than most clinics do, so this list can also help you find doctors who know Tuberous Sclerosis.
- National Institutes of Health Clinical CenterBethesda, Maryland3 trials
- Cincinnati Children's Hospital Medical CenterCincinnati, Ohio2 trials
- Boston Children's HospitalBoston, Massachusetts1 trial
- Chicago Comer Children's Hospital Neurogenetic Clinic, University of ChicagoChicago, Illinois1 trial
- Children's Mercy Research InstituteKansas City, Missouri1 trial
- Children's National Medical CenterFairfax, Virginia1 trial
- Cincinnati Children's Hospital Medical Center (CCHMC)Cincinnati, Ohio1 trial
- Cleveland Clinic FoundationCleveland, Ohio1 trial
- Le Bonheur Children's HospitalMemphis, Tennessee1 trial
- Loma Linda University Children's HospitalLoma Linda, California1 trial
Help getting to a Tuberous Sclerosis trial far from home
Ask the study team whether the trial pays back travel, parking and hotel costs, because many sponsors do. The FDA's guidance on paying research volunteers says paying back these costs does not count as pressuring someone to join.
These nonprofits also help patients reach care, and each one sets its own rules.
- Mercy Medical Angels
- Pays for gas cards, ground rides and airline tickets anywhere in the US, and it lists clinical trials as a reason to travel. Household income at or below 300% of the federal poverty guidelines, and usually a trip of 50 miles or more each way.
- Air Charity Network
- Volunteer pilots in all 50 states fly patients for free in small private planes, and members also fly people taking part in clinical trials. You must be able to walk and sit upright for the flight, show financial need and have a backup plan if weather cancels it.
- Ronald McDonald House
- Gives families a room near the hospital while a child gets care, through 394 House programs around the world. Families of a sick child, with rules set by each local chapter.
- Healthcare Hospitality Network
- Keeps a map of hospitality houses near hospitals, and most member houses charge little or nothing to patients and families. Each house sets its own rules, so check with the house near your study site.
Program details were checked on each program's website on October 24, 2026.
Questions about finding a Tuberous Sclerosis trial near you
Are there Tuberous Sclerosis clinical trials near me?
As of November 13, 2026, 20 Tuberous Sclerosis clinical trials are recruiting now and 2 are not yet recruiting. In the US, 7 of them have at least 1 open site, across 16 states. Enter your ZIP code on this page to rank every one of them by the distance to its closest open site, with the sites shown on a map.
Which states have Tuberous Sclerosis clinical trial sites?
Recruiting Tuberous Sclerosis trials list open sites in 16 states. Maryland, Ohio and Tennessee have the most, and the table on this page lists every state.
Are there Tuberous Sclerosis trials for children near me?
Of the 7 Tuberous Sclerosis trials with a US site, 6 accept children under 18. Their open sites are in 16 states, most often Maryland, Ohio and Tennessee. Each trial sets its own age limits, so check the ages listed on a trial before you contact it.
Who pays for travel to a Tuberous Sclerosis clinical trial?
Many trial sponsors pay back travel, parking and hotel costs, so ask the study team before you rule out a far-away site. The FDA's guidance says paying back these costs does not count as pressuring someone to join. Charities such as Mercy Medical Angels and Air Charity Network can also help with rides and flights.
What if there is no Tuberous Sclerosis trial near me?
Some trials send staff to your home or use a local lab, so fewer visits happen at the study site. You can also sign up on this page to get an email when a Tuberous Sclerosis trial opens a new site or changes status.
How is the distance to a trial site measured?
Distances are straight-line miles from the center of your ZIP code to each study site's listed location, not driving distance. Your browser looks up the ZIP code's coordinates with a free map service, Zippopotam.us, and the ZIP code is never sent to or stored by Trial Friend.
FDA-approved for Tuberous Sclerosis: Epidiolex (cannabidiol), Hyftor (sirolimus), Torpenz (everolimus).
Clinical trials near you for related conditions
Source: ClinicalTrials.gov, trials with status Recruiting or Not yet recruiting. Refreshed every 6 hours; counts as of November 13, 2026. Sites that ClinicalTrials.gov lists as closed or withdrawn are left out. Children means the trial's age group includes people under 18.