Study of Children Under 2 Years With Medium to Giant Congenital Nevus to Understand Development and Skin Lesion Effects

What this Trial Is About

Researchers are studying congenital nevus CN, a pigmented skin lesion present at birth that grows as the child grows. CN varies in size from small to giant and is linked to genetic mutations mainly in NRASBRAF genes. Larger CNs may lead to neurological problems such as neuro-meningeal melanosis and developmental delays, as well as an increased risk of melanoma. The study also looks at the social and emotional impact on children and their families, aiming to improve monitoring and treatment guidelines. The study involves children under 2 years old with medium to giant CN. It includes neurodevelopmental assessments using the ASQ-3 screening tool, meetings with parents to assess acceptance and quality of life via the MARKS test, and evaluations of patient quality of life. The study is non-randomized and observational in nature, focusing on monitoring and understanding CN characteristics and related risks. Participants will be followed for 3 years, during which the study will measure neurodevelopmental abnormalities, neurological issues such as epilepsy, MRI findings, melanoma occurrence, and changes in CN features. It will also assess parental satisfaction with care, lesion acceptance, and patient well-being through questionnaires. This long-term follow-up aims to gather detailed information to guide future CN management and improve outcomes for affected children.

CongenItal Naevus Cohort for Longitudinal Evaluation