A Study to Investigate Behavioral and Other Co-Occurring Outcomes With Epidiolex as Add-On Therapy in Participants Aged 1 to 65 Years of Age With Tuberous Sclerosis Complex

NCT ID: NCT05864846

Last Updated: 2025-11-13

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

ACTIVE_NOT_RECRUITING

Clinical Phase

PHASE4

Total Enrollment

79 participants

Study Classification

INTERVENTIONAL

Study Start Date

2023-06-29

Study Completion Date

2026-03-26

Brief Summary

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The purpose of this study is to investigate behavioral and other co-occurring outcomes with EPID(I/Y)OLEX as an add-on therapy in participants aged 1 to 65 years with tuberous sclerosis complex (TSC) who experience seizures.

Detailed Description

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Conditions

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Tuberous Sclerosis Complex Associated Neuropsychiatric Disease

Keywords

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Seizures Tuberous Sclerosis Complex (TSC) Tuberous Sclerosis Complex Associated Neuropsychiatric Disorders (TAND) Epidiolex Epidyolex GWP42003-P JZP926 TSC Associated Neuropsychiatric Disorders Cannabidiol Behavior

Study Design

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Allocation Method

NA

Intervention Model

SINGLE_GROUP

Primary Study Purpose

TREATMENT

Blinding Strategy

NONE

Study Groups

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Cannabidiol Oral Solution

Participants who will receive the Cannabidiol Oral Solution (CBD-OS) titrated up to a dose of 12.5 mg/kg administered twice daily for a total dose of up to 25 mg/kg/day for 26 consecutive weeks. Participants will have the option to continue receiving the CBD-OS for an additional 26 weeks, for a total of 52 weeks.

Group Type EXPERIMENTAL

Cannabidiol Oral Solution [Epidiolex]

Intervention Type DRUG

100 mg/ml Cannabidiol Oral solution

Interventions

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Cannabidiol Oral Solution [Epidiolex]

100 mg/ml Cannabidiol Oral solution

Intervention Type DRUG

Other Intervention Names

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Epidiolex

Eligibility Criteria

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Inclusion Criteria

1. Is within the required age range at the time of signing (or at the time of the participant's parent(s)/Legally Authorized Representative (LAR) signing) the informed consent or providing assent (as applicable):

* Participants based in the US: 1 to 65 years of age, inclusive.
* Participants based outside the US: 2 to 65 years of age, inclusive.
2. Has a confirmed clinical diagnosis of TSC with a history of seizures in accordance with the 2012 International Tuberous Sclerosis Complex Consensus Conference criteria.
3. Has behaviors (eg, aggression, impulsivity, temper tantrum, self-injury, hyperactivity, extreme shyness, mood swings, poor eye contact, repetitive behaviors, restlessness, difficulty getting along with peers, rigid/inflexible to procedure and/or change) that are considered moderate or severe per the CareGI-S at Screening.
4. Is taking 1 or more anti-seizure medicine (ASM) at a dose that has been stable for at least 4 weeks prior to Screening.

• All medications or interventions for epilepsy (including ketogenic diet and any neurostimulation devices for epilepsy) must have been stable for 4 weeks prior to screening and any major changes to treatment regimens should be discussed with the medical monitor.
5. Is naïve to CBD-OS treatment or has been off CBD-OS treatment for at least 3 months prior to Screening.
6. Is willing to maintain any factors expected to affect seizures stable (eg, alcohol consumption, smoking, concomitant medication usage).
7. Is male or female

1. Male participants:

• Male participants are eligible to participate if they agree to the following during the intervention period and for at least 2 weeks, corresponding to the time needed to eliminate the study intervention after the last dose of study intervention:
* Refrain from donating fresh unwashed semen. PLUS
* Use a male condom in addition to a second method of acceptable contraception used by their female partners when having sexual intercourse with a women of childbearing potential (WOCBP) who is not currently pregnant.
2. Female participants:

* A female participant is eligible to participate if she is not pregnant or breastfeeding and one of the following conditions applies:

* Is a woman of nonchildbearing potential. OR
* Is a WOCBP and using a contraceptive method that is highly effective, preferably with low user dependency during the study intervention period and for at least 3 months after the last dose of study intervention. The investigator should evaluate the potential for contraceptive method failure (eg, noncompliance, recently initiated) in relationship to the first dose of study intervention.
* A WOCBP must have a negative highly sensitive pregnancy test within 28 days before the first dose of study intervention.

Exclusion Criteria

1. Has a clinically significant unstable medical condition other than epilepsy.
2. Has an illness during the 4 weeks prior to screening other than epilepsy which, in the investigator's opinion, could affect study outcomes.
3. Has TSC-specific tumor growth which, in the investigator's opinion, could affect the effectiveness endpoints.
4. Has previously undergone significant surgery for epilepsy that, in the investigator's opinion, may impact the assessment of outcomes.
5. Has initiated felbamate within the last 12 months prior to Screening.
6. Is currently using or has in the past used recreational or medicinal cannabis or synthetic cannabinoid-based medications within the 3 months prior to Screening and is not willing to undergo a 1-month washout period before being rescreened.
7. Has received an investigational medicinal product within the 3 months prior to the Screening Visit.
8. Has previously been assigned study intervention for this study or is currently enrolled in any other interventional study.
9. Has laboratory values at the Baseline Visit that are abnormal and of clinical significance in the investigator's opinion.
10. Participant has significantly impaired hepatic function at the Baseline Visit.
11. Has any history of suicidal behavior or any suicidal ideation of type 4 or 5 as evaluated with C-SSRS or Children's C-SSRS at the Screening Visit (for participants ≥ 4 years of age).
12. Has any known or suspected hypersensitivity to cannabinoids or any of the excipients of CBD-OS.
13. Has a known or suspected history of alcohol or substance abuse.
Minimum Eligible Age

1 Year

Maximum Eligible Age

65 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Jazz Pharmaceuticals

INDUSTRY

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Locations

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Children's Hospital Colorado

Aurora, Colorado, United States

Site Status

Yale University School of Medicine

New Haven, Connecticut, United States

Site Status

University of Florida Health - Department of Neurology

Gainesville, Florida, United States

Site Status

Nicklaus Children's Health, Miami

Miami, Florida, United States

Site Status

Massachusetts General Hospital

Boston, Massachusetts, United States

Site Status

Minnesota Epilepsy Group

Roseville, Minnesota, United States

Site Status

Atrium Health Wake Forest Baptist Medical Center

Winston-Salem, North Carolina, United States

Site Status

Cincinnati Children's Hospital Medical Center

Cincinnati, Ohio, United States

Site Status

Le Bonheur Children's Hospital

Memphis, Tennessee, United States

Site Status

University of Texas Health Science Center at Houston - Clinical Research Unit

Houston, Texas, United States

Site Status

University of Texas Health Science Center - San Antonio

San Antonio, Texas, United States

Site Status

University of Virginia, Charlottesville

Charlottesville, Virginia, United States

Site Status

Alberta Children's Hospital

Calgary, Alberta, Canada

Site Status

BC Children's Hospital

Vancouver, British Columbia, Canada

Site Status

The Hospital for Sick Children

Toronto, Ontario, Canada

Site Status

The Children's Memorial Health Institute

Warsaw, , Poland

Site Status

Evelina London Children's Hospital Guys St Thomas' NHS Foundation Trust, the Guy's Hospital

London, England, United Kingdom

Site Status

University Hospitals Bristol NHS Foundation Trust

Bristol, , United Kingdom

Site Status

Sheffield Children's NHS Foundation Trust

Sheffield, , United Kingdom

Site Status

Countries

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United States Canada Poland United Kingdom

Other Identifiers

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2023-507426-17

Identifier Type: OTHER

Identifier Source: secondary_id

JZP926-402

Identifier Type: -

Identifier Source: org_study_id