Neurocutaneous Melanocytosis Registry

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

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT04548817

Enrollment

100

Registered

2020-09-16

Start date

2020-09-03

Completion date

2027-09-03

Last updated

2025-09-30

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Cutaneous Melanocytic Neoplasm, Large Cutaneous Melanocytic Nevi, Neurocutaneous Melanocytosis

Keywords

large cutaneous melanocytic nevi, LCMN, neurocutaneous melanocytosis, NCM, 20-363, Memorial Sloan Kettering Cancer Center

Brief summary

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

Interventions

None listed

Study design

Observational model

COHORT

Time perspective

PROSPECTIVE

Eligibility

Sex/Gender

ALL

Healthy volunteers

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.

Exclusion criteria

* Informed consent has not been provided.

Design outcomes

Primary

Measure	Time frame
Collect retrospective and prospective clinical, treatment and outcome data about patients with Neurocutaneous Melanocytosis (NCM) worldwide	Up to 7 years

Countries

United States

Contacts

Primary ContactYasmin Khakoo, MD

khakooy@mskcc.org212-639-8292

Backup ContactSofia Haque, MD

haques@MSKCC.ORG212-639-7170

Outcome results