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Tuberous Sclerosis ComplexPhase 3NCT05604170

Open-label Study of Adjunctive GNX Treatment in Children and Adults With TSC-related Epilepsy

A Phase 3 study testing Ganaxolone in people with Tuberous Sclerosis Complex, run by Marinus Pharmaceuticals at 54 sites in 10 countries.

Terminated

Stopped early. The study ended before it was planned to and will not resume.

Official record
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Trial summary

This is a Phase 3, global, open-label extension (OLE) study of adjunctive GNX treatment in children and adults with TSC who previously participated in either Study 1042-TSC-3001 or Study 1042-TSC-2001 Read more about this study

Who is it for?
Ages 1 year to 65 years
Conditions the study is for
Tuberous Sclerosis Complex
What is being tested?
Ganaxolone
Could I receive a placebo?
No, everyone receives an active treatment
How many people
117 participants
Where
54 sitesin 10 countries
Study dates
16 May 2022to 2 Apr 2025
Phase
Phase 3
Are there results?
Yes, posted in the registrySummary in the doctors' view

Key requirements

Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.

  • Ages 1 year to 65 years
  • All sexes
  • No healthy volunteers
  • Child, Adult, Older adult

Who may be able to join

  • Completion of Study 1042-TSC-3001 or participants who continue to meet study requirements in Study 1042-TSC-2001.
  • Participant/parent(s)/LAR(s) willing and able to give written informed consent/assent, after being properly informed of the nature and risks of the study and prior to engaging in any study-related procedures. If the participant is not qualified or able to provide written informed consent based on age, developmental stage, intellectual capacity, or other factors, parent(s)/LAR(s) must provide assent for study participation, if appropriate.
  • Parent(s)/caregiver(s) is (are) willing and able to maintain an accurate and complete daily seizure diary for the duration of the study.
  • Willing and able to take Investigational product (IP) (suspension) as directed with food TID.
  • Women of childbearing potential (WOCBP) must be using a medically acceptable method of birth control and have a negative quantitative serum beta-human chorionic growth hormone (β-HCG) test collected at the initial visit. Childbearing potential is defined as a female who is biologically capable of becoming pregnant. Medically acceptable methods of birth control include intrauterine devices (that have been in place for at least 1 month prior to the screening visit), hormonal contraceptives (eg, combined oral contraceptives, patch, vaginal ring, injectables, and implants), and surgical sterilization (such as oophorectomy or tubal ligation). When used consistently and correctly, "double-barrier" methods of contraception can be used as an effective alternative to highly effective contraception methods. Contraceptive measures such as Plan B™, sold for emergency use after unprotected sex, are not acceptable methods for routine use
  • Male participants must agree to use highly effective contraceptive methods during the study and for 30 days after the last dose of IP. Highly effective methods of contraception include surgical sterilization (such as a vasectomy) and adequate "double-barrier" methods.

Who cannot join

  • Pregnant or breastfeeding.
  • An active Central nervous system (CNS) infection, demyelinating disease, or degenerative neurological disease.
  • History of psychogenic nonepileptic seizures.
  • Any disease or condition (other than TSC) at the initial visit that could compromise the hematologic, cardiovascular (including any cardiac conduction defect), pulmonary, renal, gastrointestinal, or hepatic systems; or other conditions that might interfere with the absorption, distribution, metabolism, or excretion of the IP, or would place the participant at increased risk or interfere with the assessment of safety/efficacy. This may include any illness in the past 4 weeks which in the opinion of the investigator may affect seizure frequency.
  • Unwillingness to avoid excessive alcohol use or cannabis use throughout the study.
  • Have active suicidal plan/intent or have had active suicidal thoughts in the past 6 months or a suicide attempt in the past 6 months.
  • Known sensitivity or allergy to any component in the IP(s), progesterone, or other related steroid compounds.
  • Exposed to any other investigational drug (except for GNX in Study 1042-TSC-2001 or Study 1042-TSC-3001) or investigational device within 30 days or fewer than 5 half-lives prior to Visit 1 (first visit of the OLE). For therapies in which half-life cannot be readily established, the Sponsor's medical monitor should be consulted.

Trial locations and contacts

54 sites in 10 countries.

54 sites in 10 countries

United States20 sites
  • Children's Hospital Colorado

    Aurora, Colorado, 80045

  • Child Neurology Consultants of Austin (CNCA)

    Austin, Texas, 78757

  • Boston Children's Hospital, Harvard Medical School

    Boston, Massachusetts, 02115

  • University of North Carolina at Chapel Hill

    Chapel Hill, North Carolina, 27599

  • Atrium Health/Levine Children's Hospital

    Charlotte, North Carolina, 28207

  • Cincinnati Children's Hospital Medical Center

    Cincinnati, Ohio, 45229

  • University of Texas Southwestern Medical Center

    Dallas, Texas, 75207

  • Duke University Medical Center

    Durham, North Carolina, 27712

  • McGovern Medical School at the University of Texas Health Science Center

    Houston, Texas, 77030

  • Children's Mercy Hospital

    Kansas City, Missouri, 64108

  • Arkansas Children's Research Institute

    Little Rock, Arkansas, 72202

  • UCLA Mattel Children's Hospital, TSC Center

    Los Angeles, California, 90095

  • Le Bonheur Children's Hospital

    Memphis, Tennessee, 38103

  • Children's Hospital of Orange County

    Orange, California, 92868

  • Mayo Clinic - Rochester

    Rochester, Minnesota, 55905

  • University of Rochester Medical Center

    Rochester, New York, 14642

  • University of Utah Health Care-Pediatric Neurology

    Salt Lake City, Utah, 84108

  • Rady Children's Hospital - San Diego

    San Diego, California, 92123

  • Seattle Children's Hospital

    Seattle, Washington, 98105

  • Nemours Children's Hospital - Delaware Valley

    Wilmington, Delaware, 19803

Other trials in United States

Germany6 sites
  • Epilepsie-Zentrum Bethel - Krankenhaus Mara

    Bielefeld, 33617

  • University Hospital Bonn

    Bonn, 53127

  • ZNN - Epilepsiezentrum Frankfurt am Main

    Frankfurt, 60528

  • Universitäts Krankenhaus Freiburg

    Freiburg im Breisgau, 79106

  • Gemeinschaftskrankenhaus Herdecke

    Herdecke, 58313

  • Epilepsiezentrum Kleinwachau gGmbH

    Radeberg, 1454

Other trials in Germany

Spain6 sites
  • Hospital de la Santa Creu i Sant Pau

    Barcelona, 8025

  • Hospital Sant Joan de Déu

    Barcelona, 8950

  • Hospital Infantil Universitario Niño Jesús

    Madrid, 28009

  • Hospital Ruber International

    Madrid, 28034

  • Hospital Regional Universitario de Málaga

    Málaga, 29010

  • Hospital Universitario y Politécnico La Fe

    Valencia, 46026

Other trials in Spain

Canada5 sites
  • Hôtel Dieu de Montréal - CHUM

    Montreal, H2X 0C2

  • CHU Sainte-Justine

    Montreal, H3T 1C5

  • The Hospital for Sick Children

    Toronto, M5G 1X8

  • Toronto Western Hospital

    Toronto, M5T 2S8

  • BC Children's Hospital

    Vancouver, V6H 3V4

Other trials in Canada

China5 sites
  • Peking University First Hospital

    Beijing, 100034

  • Beijing Children Hospital, Capital Medical University

    Beijing, 100045

  • Chinese PLA General Hospital

    Beijing, 100853

  • The Affiliated Hospital of Guizhou Medical University

    Beijing, 550004

  • First Hospital of Jilin University

    Jilin City, 130021

Other trials in China

Australia4 sites
  • Austin Health

    Heidelberg, VIC 3084

  • Royal Brisbane and Women's Hospital

    Herston, QLD 4029

  • Alfred Health

    Melbourne, VIC 3004

  • Royal Melbourne Hospital

    Parkville, VIC 3050

Other trials in Australia

France3 sites
  • University Hospital of Lyon

    Bron, 69229

  • Hôpital Sud

    Rennes, 35000

  • University of Strasbourg

    Strasbourg, 67084

Other trials in France

Italy2 sites
  • Pediatric Neurology and Muscular Diseases Unit - University of Genoa

    Genova, 16147

  • Policlinico Umberto I

    Rome, 00185

Other trials in Italy

United Kingdom2 sites
  • Bristol Royal Hospital for Children

    Bristol, BS2 8AE

  • Sheffield Children's Hospital

    Sheffield, S10 2TH

Other trials in United Kingdom

Israel1 site
  • Schneider Children´s Medical Center

    Petah Tikva, 4920235

Other trials in Israel

About this study

Official title: A Phase 3, Open-label Study of Adjunctive Ganaxolone (GNX) Treatment in Children and Adults With Tuberous Sclerosis Complex (TSC)-Related Epilepsy (TrustTSC OLE)

This is a Phase 3, global, open-label extension (OLE) study of adjunctive GNX treatment in children and adults with TSC who previously participated in either Study 1042-TSC-3001 or Study 1042-TSC-2001

Being tested
Ganaxolone
Keywords
Tuberous Sclerosis Complex-Related Epilepsy, Ganaxolone, Adjunctive
Medical subject headings
Tuberous Sclerosis

What participants receive

What participants receive. In a randomised study each person is assigned to one group by chance.

  • GanaxoloneDrug

    GNX will be administered.

Study groups in NCT05604170
Study groupRoleWhat they receive
Ganaxolone (GNX) oral suspension, 3 times a day (TID)ExperimentalNot described
Receives: Drug: Ganaxolone

What is being measured

The primary outcome is the main question the study is designed to answer.

  1. Number of Participants Reporting Treatment Emergent Adverse Events (TEAEs), Serious TEAEs and Withdrawals and Dose-Reductions Due to AEs

    An adverse event (AE) was any untoward medical occurrence in a clinical study patient, temporally associated with the use of study drug, whether or not considered related to the study drug. A serious adverse event was any untoward medical occurrence that, at any dose, results in death, is life threatening, requires inpatient hospitalization or prolongation of existing hospitalization, results in persistent or significant disability/incapacity, is a congenital anomaly/birth defect, or any other event that requires scientific judgment.

    Measured: Up to 150 Weeks

  2. Number of Participants With Clinically Significant Changes in Vital Parameters

    Vital parameters including heart rate, respiration rate, blood pressure, and body temperature were measured in seated position for at least 5 minutes.

    Measured: Up to 150 Weeks

  3. Number of Participants With Clinically Significant Changes in Physical Examinations

    Physical examinations included a full physical evaluation of body systems including: General appearance, head (eyes, ears, nose, and throat), cardiovascular, respiratory, gastrointestinal, genitourinary, musculoskeletal, endocrine/metabolic, hematologic/lymphatic, skin, and other systems as appropriate.

    Measured: Up to 150 Weeks

  4. Number of Participants With Clinically Significant Changes in Neurological Examinations

    Neurological examinations included an evaluation of: Cranial nerves, motor exam, sensory exam, reflexes, coordination/cerebellar

    Measured: Up to 150 Weeks

  5. Number of Participants With Clinically Significant Changes in Developmental Examinations

    Developmental examinations (applicable only to pediatric participants 1 to 17 years of age, inclusive) included an evaluation of speech/language, motor skills, and social skills

    Measured: Up to 150 Weeks

  6. Number of Participants With Clinically Significant 12-lead Electrocardiogram (ECG) Findings

    Twelve-lead ECGs were performed by the physician using an ECG machine that automatically calculates the heart rate and measure PR, QRS, QT and QTc intervals.

    Measured: Up to 150 Weeks

  7. Number of Participants With Clinically Significant Changes in Hematology Parameters

    Blood samples were collected for the analysis of hematology parameters: hemoglobin, hematocrit, erythrocytes, thrombocytes (platelet count). Differential blood counts, including basophils, eosinophils, neutrophils, lymphocytes, and monocytes

    Measured: Week 1 through Week 150

  8. Number of Participants With Clinically Significant Changes in Chemistry Parameters

    Blood samples were collected for the analysis of chemistry parameters: blood urea nitrogen (BUN), potassium, alanine aminotransferase (ALT), alkaline phosphatase (ALP)/serum glutamic pyruvic transaminase (SGPT), total bilirubin, creatinine, sodium, aspartate aminotransferase (AST)/serum glutamic oxaloacetic (SGOT), total protein, fasting blood glucose, calcium, carbon dioxide, estimated glomerular filtration rate (eGFR), and chloride

    Measured: Up to 150 Weeks

  9. Number of Participants With Clinically Significant Changes in Urinalysis

    Urine samples were collected for the analysis of urinalysis parameters: Specific gravity, color, clarity, pH, glucose, protein, blood, nitrite, protein, ketones, bilirubin, urobilinogen, nitrite, leukocyte esterase by dipstick, and microscopic examination (if blood or protein was abnormal)

    Measured: Up to 150 Weeks

  10. Number of Participants (Age Greater Than 17 Years) With Abnormal Columbia-Suicide Severity Rating Scale (C-SSRS)

    The C-SSRS is a clinician administered assessment tool that evaluates suicidal ideation and behavior. Number of participants that have an affirmative response to the 5 items for suicidal ideation (1. Wish to be dead, 2. Non-specific active suicidal thoughts, 3. Active suicidal ideation with any methods (not plan) without intent to act, 4. Active suicidal ideation with some intent to act, without specific plan, 5. Active suicidal ideation with specific plan and intent) and/or to the 5 items for suicidal behavior (1. Preparatory acts or behavior, 2. Aborted attempt, 3. Interrupted attempt, 4. Actual attempt, 5. Completed suicide) will be reported. The score ranges from 1 to 5 and higher scores indicate worse symptoms.

    Measured: Up to Week 52

Secondary outcomes (1)
  1. Percent Change From Baseline in 28-day Seizure Frequency During Open Label Extension

    Seizure frequency will be calculated as the total number of seizures divided by the number of days with seizure data, multiplied by 28. Percent change from baseline in 28-day frequency was calculated for each participant by subtracting Baseline 28-day seizure frequency from post-Baseline 28-day seizure frequency, whole divided by Baseline 28-day seizure frequency and multiplied by 100.

    Measured: Baseline (Day 1), Week 52

Timeline

From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.

  1. First posted3 Nov 2022
  2. Study start16 May 2022
  3. Primary completion2 Apr 2025
  4. Study completion2 Apr 2025

Why it stopped: Sponsor's decision

Resources

More details

For doctors and researchers: how the study is designed, who runs it, and its registry IDs.

Study design
Study type
Interventional
Phase
Phase 3
Primary purpose
Treatment
Allocation
Not applicable
Intervention model
Single group
Masking
None (open label)
Enrolment
117 participants (actual)
IDs, dates and publications
ClinicalTrials.gov ID
NCT05604170
Sponsor's protocol ID
1042-TSC-3002
Status last verified
Sep 2025
First submitted
5 Oct 2022
Last updated
1 Oct 2025
Data monitoring committee
Yes
FDA-regulated drug
Yes
FDA-regulated device
No
Individual data sharing
No

Questions about this trial

What is this clinical trial studying?

A Phase 3 study testing Ganaxolone in people with Tuberous Sclerosis Complex, run by Marinus Pharmaceuticals at 54 sites in 10 countries.

The full registered description is in the About this study section and the official record.

Who may be eligible to take part?

The sponsor lists 6 inclusion and 8 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.

Is this clinical trial currently recruiting?

The record says: stopped early, as of the sponsor's last update on 1 Oct 2025. Status can change between updates, so confirm with the study contact before making plans.

Where is the study taking place?

The record lists 54 sites in United States, Germany, Spain, Canada, China and 5 more countries. Whether a site is taking part right now should be confirmed with that site. See every site.

What are the possible benefits and risks?

They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.

What does this phase mean?

Phase 3 studies compare the treatment with the current standard treatment or a placebo in a large group, to confirm how well it works and watch for side effects.

Not every study follows the same path, and some studies (observational studies, device studies) have no phase.

Are results available for this study?

Yes. Results are posted in the registry (first posted 1 Oct 2025). A summary is in the For doctors view, and the full results are on ClinicalTrials.gov.

How can a doctor refer a patient or contact the research team?

The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.

What does the primary outcome measure?

Number of Participants Reporting Treatment Emergent Adverse Events (TEAEs), Serious TEAEs and Withdrawals and Dose-Reductions Due to AEs (time frame: Up to 150 Weeks). The study lists 10 primary outcomes in all. It is what the study was designed to measure, not a finding.

Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?

No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.

How often is this information updated?

AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 1 Oct 2025.

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