Characterizing Sleep Disorders in Children and Adults With Tuberous Sclerosis Complex (TSC)

NCT ID: NCT03326765

Last Updated: 2018-10-17

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

UNKNOWN

Clinical Phase

NA

Total Enrollment

60 participants

Study Classification

INTERVENTIONAL

Study Start Date

2017-09-27

Study Completion Date

2019-11-30

Brief Summary

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The proposed research project is aimed at further characterization of sleep problems and evaluation of their impact in children and adults with TSC, excluding epilepsy as contributing factor. Questionnaire-based studies have shown that sleep problems occur in up to half of the children and a third of adults with tuberous sclerosis complex (TSC). However, there is only limited information on the nature of sleep problems and their impact on patients with TSC and their families.

Detailed Description

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Questionnaire-based studies have shown that sleep problems occur in up to half of the children and a third of adults with tuberous sclerosis complex (TSC). However, there is only limited information on the nature of sleep problems and their impact on patients with TSC and their families. It is known from a questionnaire-based study in children with TSC that they often wake early or wake frequently during the night, and that they can be more tired during the day. In some children, sleep-problems seem to be related to the presence of seizures during the night. This has been confirmed in a study on 10 children with TSC and epilepsy by a combination of polysomnography (sleep study) and electroencephalography (EEG). A questionnaire-based study in adults also revealed the association with epilepsy features, and showed influence of mental health complaints on sleep.

Sleep structure and quality will be assessed through formal sleep studies (polysomnography and actigraphy). The influence of abnormal brain activity on sleep will be mapped by simultaneous recording of brain activity by means of EEG. The impact of sleep disorders will be determined through interviews with individuals with TSC and their relatives. The investigators will also use questionnaires and diaries to supplement their findings.

Importance: It is expected that the results of this study will 1) improve our understanding of sleep problems in TSC, 2) provide additional information on the influence of TSC on sleep, 3) give a more in-depth view on the impact of sleep problems on the lives of individuals with TSC and their families, 4) increase awareness about sleep problems in TSC, and 5) contribute to a better management of sleep problems by patients and families.

Conditions

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Sleep Disorder

Study Design

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Allocation Method

NON_RANDOMIZED

Intervention Model

PARALLEL

2 groups:

* 30 Children(0-18y) withTSC without epilepsy
* 30 Adults(\>18y) withTSC without epilepsy
Primary Study Purpose

OTHER

Blinding Strategy

NONE

Study Groups

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Children

Questionnaires electroencephalogram (EEG) Actigraphy polysomnography

Group Type OTHER

Questionnaires

Intervention Type OTHER

* Epworth sleepiness scale
* Pittsburgh sleep quality Index (PSQI)
* EQ-5D Adults
* Pediatric Daytime Sleepiness scale (PDSS)
* Sleep disturbance Scale for Children (SDSC
* EQ-5D Children
* Sleaping diary

electroencephalogram (EEG)

Intervention Type PROCEDURE

is an electrophysiological monitoring method to record electrical activity of the brain

polysomnography

Intervention Type PROCEDURE

type of sleep study, is a multi-parametric test used in the study of sleep and as a diagnostic tool in sleep medicine

Actigraphy

Intervention Type PROCEDURE

type of sleep study based on bracelet around the wrist

Adults

Questionnaires electroencephalogram (EEG) Actigraphy polysomnography

Group Type OTHER

Questionnaires

Intervention Type OTHER

* Epworth sleepiness scale
* Pittsburgh sleep quality Index (PSQI)
* EQ-5D Adults
* Pediatric Daytime Sleepiness scale (PDSS)
* Sleep disturbance Scale for Children (SDSC
* EQ-5D Children
* Sleaping diary

electroencephalogram (EEG)

Intervention Type PROCEDURE

is an electrophysiological monitoring method to record electrical activity of the brain

polysomnography

Intervention Type PROCEDURE

type of sleep study, is a multi-parametric test used in the study of sleep and as a diagnostic tool in sleep medicine

Actigraphy

Intervention Type PROCEDURE

type of sleep study based on bracelet around the wrist

Interventions

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Questionnaires

* Epworth sleepiness scale
* Pittsburgh sleep quality Index (PSQI)
* EQ-5D Adults
* Pediatric Daytime Sleepiness scale (PDSS)
* Sleep disturbance Scale for Children (SDSC
* EQ-5D Children
* Sleaping diary

Intervention Type OTHER

electroencephalogram (EEG)

is an electrophysiological monitoring method to record electrical activity of the brain

Intervention Type PROCEDURE

polysomnography

type of sleep study, is a multi-parametric test used in the study of sleep and as a diagnostic tool in sleep medicine

Intervention Type PROCEDURE

Actigraphy

type of sleep study based on bracelet around the wrist

Intervention Type PROCEDURE

Eligibility Criteria

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Inclusion Criteria

Children and adults with definite TSC based on the 2012 Consensus Conference Diagnostic

Exclusion Criteria

* daily alcohol intake
* pregnancy
* caffeine abuse (\>4 cups/day)
* shift work
* drug abuse
* anti-depressive therapy
* medications as benzodiazepine, melatonin, phenobarbital and antihistamines
* the presence of clinical or electrographic seizures.
Minimum Eligible Age

1 Day

Maximum Eligible Age

70 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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Universitair Ziekenhuis Brussel

OTHER

Sponsor Role lead

Responsible Party

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Veerle Van Mossevelde

Study coordinator

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Anna Jansen, PhD, MD

Role: PRINCIPAL_INVESTIGATOR

Universitair Ziekenhuis Brussel

Sonia De Weerdt, MD

Role: PRINCIPAL_INVESTIGATOR

Universitair Ziekenhuis Brussel

Alessandra Pereira,, PhD, MD

Role: PRINCIPAL_INVESTIGATOR

Department of Pediatrics School of Medicine, PUCRS, Brazil

Magda Nunes, PhD, MD

Role: PRINCIPAL_INVESTIGATOR

Director, School of Medicine, PUCRS, Brazil; Brain Instititute of Rio Grande do Sul, Brazil

Oliviero Bruni, PhD, MD

Role: PRINCIPAL_INVESTIGATOR

Department of Developmental and Social Psychology, Sapienza University of Rome, Italy

Paolo Curatolo, PhD, MD

Role: PRINCIPAL_INVESTIGATOR

Director, Child Neurology and Psychiatry Unit, Systems Medicine Department, Tor Vergata University of Rome, Italy

Locations

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Universitair Ziekenhuis Brussel

Jette, Vlaams Brabant, Belgium

Site Status RECRUITING

Countries

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Belgium

Central Contacts

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Veerle Van Mossevelde, Study coordinator

Role: CONTACT

+3224763134

Dirk De Clippeleir, Study coordinator

Role: CONTACT

+3224763580

Facility Contacts

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Veerle Van Mossevelde, Datanurse

Role: primary

+3224763134

Other Identifiers

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TSC v 1.0

Identifier Type: -

Identifier Source: org_study_id

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