A Registry for Patients with Neurocutaneous Melanocytosis

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Full Title

Prospective Registry of Patients with Neurocutaneous Melanocytosis (NCM) Including Cutaneous and CNS Involvement

Purpose

The purpose of this study is to establish a registry to learn about neurocutaneous melanocytosis (NCM) and how people respond to treatments for this rare disease. NCM is seen mainly in children born with large dark-colored areas of skin called cutaneous melanocytic nevi (LCMN). About one in four of children with LCMN also develop NCM.

People with NCM have cells that give the skin its color (melanocytes) in the brain and spinal cord (which make up the central nervous system, or CNS). NCM can cause symptoms such as headaches, vomiting, and seizures, as well as problems with movement and eyesight.

About one in four people with NCM also develop melanoma. Although new treatments have recently been developed for other types of melanoma, no targeted treatment is currently available for NCM-associated melanoma. Gathering information about NCM and how it affects people will help researchers better understand the way the disease grows and responds to treatments. This study may also involve collecting a portion of tissue removed during a past surgery; it will not provide treatment for any condition.

Eligibility

Participants in this study include patients of any age with LCMN or melanocytosis in the CNS.

For more information about the registry, please call Dr. Yasmin Khakoo at 212-639-8292.

Protocol

20-363

Investigator