Efficacy and Safety of Rapamycin Versus Vigabatrin in the Prevention of Tuberous Sclerosis Complex Symptoms in Infants

NCT ID: NCT04987463

Last Updated: 2024-02-08

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

RECRUITING

Clinical Phase

PHASE2/PHASE3

Total Enrollment

60 participants

Study Classification

INTERVENTIONAL

Study Start Date

2021-05-07

Study Completion Date

2026-03-31

Brief Summary

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The purpose of the study is to evaluate the efficacy, tolerability, and safety of vigabatrin versus rapamycin as a preventive treatment in infants with Tuberous Sclerosis Complex (TSC).

Detailed Description

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This is a two-arm, randomized, double-blind and double-dummy, placebo controlled study to evaluate the efficacy, tolerability, and safety of vigabatrin versus rapamycin as a preventive treatment in infants with TSC. The study consists of 3 phases for each patient: screening, core blinded phase, and open-label follow-up phase. Patients who meet the eligibility criteria will be randomized to receive vigabatrin or rapamycin. The randomization ratio is 1:1. Randomization will be stratified by the sex and the presence of epileptiform activity on baseline videoEEG (video electroencephalography) recording (yes versus no). Approximately 60 infants are planned to be enrolled in the study.

Conditions

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Tuberous Sclerosis Complex

Study Design

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Allocation Method

RANDOMIZED

Intervention Model

PARALLEL

Primary Study Purpose

PREVENTION

Blinding Strategy

DOUBLE

Participants Investigators
Triple

Study Groups

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Vigabatrin arm

Vigabatrin in capsules co-administered with placebo in liquid.

Group Type EXPERIMENTAL

Vigabatrin

Intervention Type DRUG

Vigabatrin in capsules administered orally, initially (between V1 and V2) once daily in the evening,and starting from V2 administered two times daily.

Placebo

Intervention Type DRUG

Placebo in liquid administered orally, once daily, in the morning. The starting dose of placebo in liquid will be calculated according to the body weight of the patient measured at V1.

Rapamycin arm

Rapamycin in liquid co-administered with placebo in capsules.

Group Type EXPERIMENTAL

Rapamycin

Intervention Type DRUG

Rapamycin in liquid administered orally, in the morning, every other day or daily depending on the patient's body weight. The starting dose of rapamycin will be calculated according to the body weight of the patient measured at V1.

Placebo

Intervention Type DRUG

Placebo in granules administered orally, initially once daily in the evening,and after reaching the targeted dose administered two times daily.

Interventions

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Vigabatrin

Vigabatrin in capsules administered orally, initially (between V1 and V2) once daily in the evening,and starting from V2 administered two times daily.

Intervention Type DRUG

Rapamycin

Rapamycin in liquid administered orally, in the morning, every other day or daily depending on the patient's body weight. The starting dose of rapamycin will be calculated according to the body weight of the patient measured at V1.

Intervention Type DRUG

Placebo

Placebo in liquid administered orally, once daily, in the morning. The starting dose of placebo in liquid will be calculated according to the body weight of the patient measured at V1.

Intervention Type DRUG

Placebo

Placebo in granules administered orally, initially once daily in the evening,and after reaching the targeted dose administered two times daily.

Intervention Type DRUG

Other Intervention Names

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Placebo in liquid Placebo in granules

Eligibility Criteria

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Inclusion Criteria

* Male or female aged from 4 up to 16 weeks (44-56 weeks of gestational age) at the day of randomization
* Parents/caregivers are willing to and able to give informed consent form for the participation in the study
* Parents/caregivers are willing to and able to comply with all study requirements
* Definite diagnosis of TSC according to the Consensus criteria (Northrup,2013)
* At least 1 focus of cortical dysplasia disclosed on brain MRI

Exclusion Criteria

* history of seizures prior to randomization,
* history of antiepileptic treatment,
* history of treatment with mTOR (mammalian Target of Rapamycin) inhibitor,
* gestational age below 44 weeks at the day of randomization,
* body weight lower than 3 kg at the day of randomization,
* SEGA (Subependymal Giant Cell Astrocytoma) or other TSC-associated lesion requiring urgent surgical intervention
* recent surgery within 1 month prior to the randomization
* intercurrent infection at the date of randomization
* known history of HIV seropositivity
* live vaccination within 1 month prior to randomization\*
* lack of first TBC and hepatitis B vaccinations
* Any significant clinical, laboratory , ECG or other abnormalities, comorbidity or concomitant treatment which, in the opinion of the investigator, may either put a patient at significant risk associated with the participation in the study or may influence the results of the study.
* Use of an investigational drug within 1 month prior to randomization.
Minimum Eligible Age

4 Weeks

Maximum Eligible Age

16 Weeks

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Katarzyna Kotulska

OTHER

Sponsor Role lead

Responsible Party

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Katarzyna Kotulska

Head of the Department of Neurology and Epileptology at The Children's Memorial Health Institute

Responsibility Role SPONSOR_INVESTIGATOR

Principal Investigators

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Katarzyna Kotulska-Jozwiak

Role: PRINCIPAL_INVESTIGATOR

The Children's Memorial Health Institute

Locations

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Medical University of Warsaw, Department of Pediatric Neurology

Warsaw, , Poland

Site Status NOT_YET_RECRUITING

Children's Memorial Health Institute, Neurology and Epileptology

Warsaw, , Poland

Site Status RECRUITING

Countries

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Poland

Central Contacts

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Katarzyna Kotulska-Jozwiak

Role: CONTACT

+48 22 8157404

Monika Szkop

Role: CONTACT

+48 22 815 74 04

Facility Contacts

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Sergiusz Jozwiak

Role: primary

48 22 3179681

Katarzyna Kotulska-Jozwiak

Role: primary

+48 22 8157404

Other Identifiers

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ViRap

Identifier Type: -

Identifier Source: org_study_id

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