Neurocutaneous Melanocytosis Registry

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

Total Enrollment

100 participants

Study Classification

OBSERVATIONAL

Study Start Date

2020-09-03

Study Completion Date

2027-09-03

Brief Summary

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This study will involve collecting information about the regular medical care you receive for large cutaneous melanocytic nevi (LCMN) or neurocutaneous melanocytosis (NCM).

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Detailed Description

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Conditions

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Cutaneous Melanocytic Neoplasm Large Cutaneous Melanocytic Nevi Neurocutaneous Melanocytosis

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Neurocutaneous Melanocytosis

Participants will have Neurocutaneous Melanocytosis (NCM) Including Cutaneous and CNS Involvement

No interventions assigned to this group

Eligibility Criteria

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Inclusion Criteria

* Patients with LCMN, defined as:

* Dark-colored patch of skin present at birth
* Can be located anywhere on the individual's skin
* May include satellite lesions
* May be associated with hypertrichosis

OR, in absence of cutaneous involvement:

* histologically or radiographically confirmed CNS melanocytosis.

* Any age at diagnosis.
* Signed informed consent by a patient, or parent/legal guardian.
* Deceased patients can be included provided that parent/legal guardian is contacted at least 6 months after the death of the child and not on the child's birthday or anniversary of death.

Pathology review at MSK is not mandatory to confirm the diagnosis of LCMN or NCM. We will not require pathology analysis of leptomeningeal deposits in patients where characteristic skin lesions are present and melanosis of the meninges is radiographically evident. However, if pathology samples have already been obtained as part of a patient's evaluation and treatment at another institution, tissue samples will be requested for review and confirmation of the diagnosis.