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Neurocutaneous Melanocytosis Registry

NCT04548817 · Memorial Sloan Kettering Cancer Center
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Official title
Prospective Registry of Patients With Neurocutaneous Melanocytosis (NCM) Including Cutaneous and CNS Involvement
About this study
This study will involve collecting information about the regular medical care you receive for large cutaneous melanocytic nevi (LCMN) or neurocutaneous melanocytosis (NCM).
Eligibility criteria
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.
Study design
Enrollment target: 100 participants
Age groups: child, adult, older_adult
Timeline
Starts: 2020-09-03
Estimated completion: 2027-09-03
Last updated: 2025-09-30
Primary outcomes
  • Collect retrospective and prospective clinical, treatment and outcome data about patients with Neurocutaneous Melanocytosis (NCM) worldwide (Up to 7 years)
Sponsor
Memorial Sloan Kettering Cancer Center · other
Contacts & investigators
ContactYasmin Khakoo, MD · contact · khakooy@mskcc.org · 212-639-8292
ContactSofia Haque, MD · contact · haques@MSKCC.ORG · 212-639-7170
InvestigatorYasmin Khakoo, MD · principal_investigator, Memorial Sloan Kettering Cancer Center
All locations (2)
Boston Children's Hospital (Data Analysis Only)Not Yet Recruiting
Boston, Massachusetts, United States
Memorial Sloan Kettering Cancer Center (All Protocol Activities)Recruiting
New York, New York, United States