Characterization and Support for Neurodevelopmental Disorders Associated with Congenital Heart Defects

NCT ID: NCT06442592

Last Updated: 2024-12-24

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

NA

Total Enrollment

1206 participants

Study Classification

INTERVENTIONAL

Study Start Date

2024-07-08

Study Completion Date

2025-08-08

Brief Summary

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The leading cause of birth defects, Congenital Heart Defects (CHD) affect 12 million people worldwide and 41,000 newborns/year in Europe. It's a major cause of life-long morbidity and mortality, and a crucial public health issue. More than 50% of childs born with critical CHD will develop Neurodevelopmental Disorders (NDs), requiring specific care and impairing quality of life. NDs corresponds to early and lasting disturbances in cognitive, affective and behavioral development, linked to abnormalities in brain development. They are heterogeneous, affecting language, learning, motor skills, intellectual efficiency, social cognition, attention, memory and executive functions, and are associated with psychosocial difficulties (adaptive behavior, social interactions). This hidden handicap is the main long-term sequels of CHD, even before cardiovascular sequels, in individuals who often underwent multiple heart operations in early childhood. NDs concern not only complex CHD, but also simple CHD repaired in childhood and considered cured.

The origin of TND associated with CHD is largely unknown. To date, few genetic or environmental causes have been clearly identified, but recent work has suggested that a common origin may link cardiac malformation and neurodevelopmental abnormality.

The CATAMARAN - Pediatrics project is designed to detect potential neurodevelopmental delays associated with CHD as early as age 3, and to identify individual susceptibility factors involved in the occurrence of NDs in CHD children.

Detailed Description

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Conditions

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Congenital Heart Defects Neurodevelopmental Disorder

Keywords

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Congenital Heart Defects Neurodevelopmental Disorder Genetics

Study Design

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Allocation Method

NON_RANDOMIZED

Intervention Model

PARALLEL

Primary Study Purpose

SCREENING

Blinding Strategy

NONE

Study Groups

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CATAMARAN - Pediatrics - Nantes

The study population will consist of 201 children aged 3 to 11 and their two parents.

Group Type OTHER

Blood sampling

Intervention Type OTHER

An EDTA blood sample will be taken from the children and their two parents. Sample volume will be 2 x 3mL.

Assessment of neurodevelopment (Nantes)

Intervention Type DIAGNOSTIC_TEST

The children will be seen by a multidisciplinary team (including a neuropsychologist), who will then determine whether or not they have neurodevelopmental disorders.

Assessment of the parental stress

Intervention Type OTHER

Parents' parental stress will be assessed using the Parental Stress Index (PSI) questionnaire.

CATAMARAN - Pediatrics - Associated centers (excluding Nantes)

The study population will consist of 201 children aged 3 to 11 and their two parents.

Group Type OTHER

Blood sampling

Intervention Type OTHER

An EDTA blood sample will be taken from the children and their two parents. Sample volume will be 2 x 3mL.

Assessment of neurodevelopment (CA)

Intervention Type DIAGNOSTIC_TEST

The children will be seen by a neuropsychologist, who will then determine whether or not they have neurodevelopmental disorders.

Assessment of the parental stress

Intervention Type OTHER

Parents' parental stress will be assessed using the Parental Stress Index (PSI) questionnaire.

Interventions

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Blood sampling

An EDTA blood sample will be taken from the children and their two parents. Sample volume will be 2 x 3mL.

Intervention Type OTHER

Assessment of neurodevelopment (CA)

The children will be seen by a neuropsychologist, who will then determine whether or not they have neurodevelopmental disorders.

Intervention Type DIAGNOSTIC_TEST

Assessment of neurodevelopment (Nantes)

The children will be seen by a multidisciplinary team (including a neuropsychologist), who will then determine whether or not they have neurodevelopmental disorders.

Intervention Type DIAGNOSTIC_TEST

Assessment of the parental stress

Parents' parental stress will be assessed using the Parental Stress Index (PSI) questionnaire.

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* Child (aged 3 to 11) with critical MCC operated on for heart surgery during the first three months of life
* Parents and child affiliated with or benefiting from a social security or similar scheme
* Parents' and child's good understanding of the French language
* Free, informed and written consent of both parents for themselves and for the child
* Free, informed and written consent of the child aged 6 and over
* Biological parents

Exclusion Criteria

* Genetic anomaly or malformative syndrome associated with neurodevelopmental abnormalities, identified prior to inclusion
* Neurodevelopmental assessment not practicable
Minimum Eligible Age

3 Years

Maximum Eligible Age

11 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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University of Angers - Pays de la Loire psychology laboratory

UNKNOWN

Sponsor Role collaborator

Nantes University Hospital

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Locations

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Chu Brest

Brest, Brittany Region, France

Site Status NOT_YET_RECRUITING

CHU Rennes

Rennes, Brittany Region, France

Site Status NOT_YET_RECRUITING

CHU Nantes

Nantes, Loire-Atlantique, France

Site Status RECRUITING

CHU Angers

Angers, Maine-et-Loire, France

Site Status NOT_YET_RECRUITING

CHU Tours

Tours, Val de Loire, France

Site Status NOT_YET_RECRUITING

Countries

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France

Central Contacts

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Alban Baruteau

Role: CONTACT

Phone: 02 40 08 77 42

Email: [email protected]

Facility Contacts

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Guillaume DEVERRIERE

Role: primary

Guillaume DEVERRIERE

Role: backup

Clémence Le Seven

Role: primary

Alban Baruteau

Role: primary

Alban Baruteau

Role: backup

Anne-Sophie Lety

Role: primary

Bruno Lefort

Role: primary

Other Identifiers

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2024-A00428-39

Identifier Type: OTHER

Identifier Source: secondary_id

RC23_0548

Identifier Type: -

Identifier Source: org_study_id