Drug shows promise for Long-Term seizure control in rare disease
NCT ID NCT02962414
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study looks at the long-term safety of everolimus in people with tuberous sclerosis complex (TSC) who have seizures that are hard to control. Participants are already taking everolimus and benefiting from it in an earlier study. The goal is to see if the drug remains safe and helpful over a longer period. About 206 people are taking part.
What this could mean
Our plain-language read of the trial. This is informational only — not medical advice or a prediction.
- Active substance
- everolimus
- What this could lead to
- If successful, this study could confirm that everolimus is safe and effective for long-term seizure control in people with tuberous sclerosis complex.
- What could go wrong
- This is an open-label roll-over study with no placebo group, so results may be biased. It only includes people already benefiting, so it may not reflect real-world outcomes for all patients.
This is an AI summary of the original study and may miss details. Read our disclaimer.
Get updates
Get notified about this study
Sign up to get updates when this study changes or when new studies for TUBEROUS SCLEROSIS COMPLEX are added.
By submitting, you agree to our Terms of use
Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
Locations
-
Atlantic Health Systems
Morristown, New Jersey, 07962, United States
-
Childrens Hospital of Philadelphia
Philadelphia, Pennsylvania, 19104, United States
-
Cinn Children Hosp Medical Center
Cincinnati, Ohio, 45229-3039, United States
-
Connecticut Childrens Medical Cntr
Hartford, Connecticut, 06106, United States
-
David Geffen School of Medicine at UCLA
Los Angeles, California, 90005-1752, United States
-
Minnesota Epilepsy Group
Saint Paul, Minnesota, 55102, United States
-
Novartis Investigative Site
Sydney, New South Wales, 2031, Australia
-
Novartis Investigative Site
Nedlands, Western Australia, 6009, Australia
-
Novartis Investigative Site
Brussels, 1090, Belgium
-
Novartis Investigative Site
Brussels, 1200, Belgium
-
Novartis Investigative Site
Ghent, 9000, Belgium
-
Novartis Investigative Site
Leuven, 3000, Belgium
-
Novartis Investigative Site
Vancouver, British Columbia, V6H 3V4, Canada
-
Novartis Investigative Site
Cali, Valle del Cauca Department, 760032, Colombia
-
Novartis Investigative Site
Amiens, 80054, France
-
Novartis Investigative Site
Bron, 69677, France
-
Novartis Investigative Site
Lille, 59037, France
-
Novartis Investigative Site
Marseille, 13885, France
-
Novartis Investigative Site
Strasbourg, 67000, France
-
Novartis Investigative Site
Budapest, 1145, Hungary
-
Novartis Investigative Site
Bari, BA, 70124, Italy
-
Novartis Investigative Site
Bologna, BO, 40139, Italy
-
Novartis Investigative Site
Pavia, PV, 27100, Italy
-
Novartis Investigative Site
Roma, RM, 00161, Italy
-
Novartis Investigative Site
Siena, SI, 53100, Italy
-
Novartis Investigative Site
Suita, Osaka, 565-0871, Japan
-
Novartis Investigative Site
Shizuoka, Shizuoka, 4208688, Japan
-
Novartis Investigative Site
Okayama, 7008558, Japan
-
Novartis Investigative Site
Osaka, 5340021, Japan
-
Novartis Investigative Site
Guadalajara, Jalisco, 44280, Mexico
-
Novartis Investigative Site
Warsaw, 04-730, Poland
-
Novartis Investigative Site
Samara, Samara Oblast, 443095, Russia
-
Novartis Investigative Site
Moscow, 119991, Russia
-
Novartis Investigative Site
Moscow, 127412, Russia
-
Novartis Investigative Site
Voronezh, 394024, Russia
-
Novartis Investigative Site
Seoul, 03080, South Korea
-
Novartis Investigative Site
Seoul, 03722, South Korea
-
Novartis Investigative Site
Seoul, 06351, South Korea
-
Novartis Investigative Site
Donostia / San Sebastian, Gipuzkoa, 20014, Spain
-
Novartis Investigative Site
Barcelona, 08035, Spain
-
Novartis Investigative Site
Madrid, 28009, Spain
-
Novartis Investigative Site
Madrid, 28041, Spain
-
Novartis Investigative Site
Seville, 41013, Spain
-
Novartis Investigative Site
Valencia, 46026, Spain
-
Novartis Investigative Site
Kaohsiung City, 83301, Taiwan
-
Novartis Investigative Site
Tainan, 704302, Taiwan
-
Novartis Investigative Site
Taipei, 10002, Taiwan
-
Novartis Investigative Site
Bangkok, 10330, Thailand
-
Novartis Investigative Site
Bangkok, 10400, Thailand
-
Novartis Investigative Site
Bangkok, 10700, Thailand
-
Novartis Investigative Site
Istanbul, Fatih, 34093, Turkey (Türkiye)
-
Novartis Investigative Site
Ankara, Yenimahalle, 06500, Turkey (Türkiye)
-
Novartis Investigative Site
Birmingham, West Midlands, B15 2TH, United Kingdom
-
Novartis Investigative Site
Buckinghamshire, SL9 0RJ, United Kingdom
-
Novartis Investigative Site
Cambridge, CB2 0QQ, United Kingdom
-
Novartis Investigative Site
Liverpool, L12 2AP, United Kingdom
-
Novartis Investigative Site
London, SW17 0QT, United Kingdom
-
Novartis Investigative Site
London, WC1N 3JH, United Kingdom
-
Novartis Investigative Site
Sheffield, S10 2TH, United Kingdom
-
Novartis Investigative Site
York, YO31 7EX, United Kingdom
-
Oregon Health Sciences University
Portland, Oregon, 97239, United States
-
Rady Children s Hospital
San Diego, California, 92123, United States
-
TGen APNNA
Phoenix, Arizona, 85012, United States
-
Texas Childrens Hospital
Houston, Texas, 77030, United States
-
Texas Scottish Rite Hos for Child
Dallas, Texas, 75219, United States
-
UCSF Benioff Children s Hospital
Oakland, California, 94609, United States
-
University of Chicago Medical Center
Chicago, Illinois, 60637, United States
-
University of Colorado School of Medicine
Aurora, Colorado, 80045, United States
More trials for these conditions
Other studies related to the condition(s) this trial covers.
- Brain imaging may unlock early clues to autism in tuberous sclerosis
- Play therapy may boost social skills in infants with tuberous sclerosis — a trial puts it to the test
- New daily pill aims to tame stubborn seizures in tuberous sclerosis
- New italian model aims to ease epilepsy care transition for teens
- Massive TSC data and tissue bank opens to researchers
- Walking analysis sheds light on rare genetic disorders