CongenItal Naevus Cohort for Longitudinal Evaluation

NCT ID: NCT06828822

Last Updated: 2025-05-30

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

NOT_YET_RECRUITING

Clinical Phase

NA

Total Enrollment

819 participants

Study Classification

INTERVENTIONAL

Study Start Date

2025-06-01

Study Completion Date

2031-06-01

Brief Summary

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Congenital Nevus (CN) is a pigmented skin lesion present at birth, which grows in size as the child grows. It can vary in appearance and is classified by its size, from small (less than 1.5 cm) to giant (greater than 40 cm). CN is associated with genetic mutations, mainly in the NRAS/BRAF genes.

A large CN can lead to several clinical issues, including:

Risk of neurological disorders: Large CN can be associated with neurological abnormalities such as neuro-meningeal melanosis, hydrocephalus, or brain malformations. These conditions may cause early neuro-developmental delays. The risk is not well understood and requires further studies.

Risk of melanoma: The risk of developing melanoma is higher for a large CN but remains low for smaller ones. Increased monitoring is necessary during the early years for large and giant CN.

Psycho-social impact: Parents often experience significant anxiety at birth due to the cancer risk and social stigma. As the child grows, a visible CN may impact their quality of life, particularly socially at school.

Management of CN remains controversial, especially for those of medium to giant size or with multiple satellites. There is an urgent need for further research to clarify best practices in monitoring and treatment, including the need for routine brain imaging and criteria for surgical intervention.

Ultimately, this study aims to deepen our understanding of CN, its associated neurological and melanoma risks, and the psycho-social challenges it poses, while striving to establish clear, evidence-based guidelines for monitoring and treatment to enhance patient outcomes and quality of life.

Detailed Description

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Conditions

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Naevi Neurodevelopmental Disorder Congenital Nevus

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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Child with a congenital nevus

Group Type EXPERIMENTAL

Neurodevelopmental assessment

Intervention Type OTHER

This assessment will be conducted using the ASQ-3 test. (ASQ-3 stands for Ages and Stages Questionnaires, Third Edition, which is a common screening tool for evaluating developmental progress in young children.)

Patient quality of life assessment

Intervention Type OTHER

Collection of patient quality of life data

Legal representatives

Group Type OTHER

Meeting with the parents

Intervention Type OTHER

This meeting will evaluate the parents' acceptance of the lesion and their quality of life using the MARKS test (Measure of Acceptance of Skin Marks). The results will provide insights into how the parents perceive the lesion and how it impacts their daily lives.

Interventions

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Neurodevelopmental assessment

This assessment will be conducted using the ASQ-3 test. (ASQ-3 stands for Ages and Stages Questionnaires, Third Edition, which is a common screening tool for evaluating developmental progress in young children.)

Intervention Type OTHER

Meeting with the parents

This meeting will evaluate the parents' acceptance of the lesion and their quality of life using the MARKS test (Measure of Acceptance of Skin Marks). The results will provide insights into how the parents perceive the lesion and how it impacts their daily lives.

Intervention Type OTHER

Patient quality of life assessment

Collection of patient quality of life data

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* Patient under 2 years old.
* Patient with a medium, large, or giant congenital nevus (CN) according to the Krengel classification, either single or multiple.
* Patient affiliated with social security.
* Patient whose legal representatives consent to their child's participation in the project.

Exclusion Criteria

* Patient with light brown spots or pigmented lesions not classified as nevi.
* Patient for whom It is impossible to establish annual follow-up.
* Patient whose parents do not speak French.
Minimum Eligible Age

0 Years

Maximum Eligible Age

24 Months

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Nantes University Hospital

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Locations

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Grasse Hospital

Nice, Alpes-Maritimes, France

Site Status

Nice University Hospital and Lenval Hospital

Nice, Alpes-Maritimes, France

Site Status

Marseille University Hospital

Marseille, Bouches-du-Rhône, France

Site Status

Dijon University Hospital

Dijon, Côte-d'Or, France

Site Status

La Réunion University Hospital

La Réunion, Département Et Région D'outre-mer, France

Site Status

Brest University Hospital

Brest, Finistère, France

Site Status

Bordeaux University Hospital

Bordeaux, Gironde, France

Site Status

Toulouse University Hospital

Toulouse, Haute-Garonne, France

Site Status

Rennes University Hospital

Rennes, Ille-et-Vilaine, France

Site Status

Tours University Hospital

Tours, Indre-et-Loire, France

Site Status

Nantes University Hospital

Nantes, Loire Atlantique, France

Site Status

Angers University Hospital

Angers, Maine et Loire, France

Site Status

Nancy University Hospital

Nancy, Meurthe-et-Moselle, France

Site Status

Saint Vincent de Paul Hospital

Lille, Nord, France

Site Status

Paris Necker Hospital

Paris, Paris, France

Site Status

Countries

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France

Central Contacts

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Research and Innovation Department of Nantes UH

Role: CONTACT

+33253482810

Hélène AUBERT, M.D.

Role: CONTACT

Facility Contacts

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Thomas HUBICHE, M.D

Role: primary

+33492037777

Christine CHIAVERINI, M.D

Role: primary

+33492037777

Stéphanie MALLET, M.D

Role: primary

+33491380000

Bertille BONNIAUD, M.D

Role: primary

+33380293031

Juliette MIQUEL, M.D

Role: primary

+33262359000

Claire ABASQ, M.D

Role: primary

+33298223315

Dorine CANU, M.D

Role: primary

+33557822828

Maella SEVERINO-FREIRE, M.D

Role: primary

+33567771408

Catherine DROITCOURT, M.D

Role: primary

+33299284368

Annabel MARUANI, UH Practitioner

Role: primary

+33663392409

Hélène AUBERT, M.D.

Role: primary

+33240083126

Ludovic MARTIN, UH Practitioner

Role: primary

+33241353637

Anne-Claire BURSZTEJN, M.D

Role: primary

+33383157146

Audrey LASEK, M.D

Role: primary

+33320877576

Olivia BOCCARA, M.D

Role: primary

+33144494000

Other Identifiers

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RC24_0532

Identifier Type: -

Identifier Source: org_study_id

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