Neurocutaneous Melanocytosis Registry
Recruiting now
Conditions studied: Cutaneous Melanocytic Neoplasm, Large Cutaneous Melanocytic Nevi, Neurocutaneous Melanocytosis
In brief
This study will involve collecting information about the regular medical care you receive for large cutaneous melanocytic nevi (LCMN) or neurocutaneous melanocytosis (NCM).
Key facts
- Study ID
- NCT04548817
- Run by
- Memorial Sloan Kettering Cancer Center
- People needed
- 100
- Starts
- 2020-09-03
- Expected to finish
- 2027-09-03
- Last updated by the study team
- 2025-09-30
Who can join
Age: any. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- 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.
You may not qualify if…
- Informed consent has not been provided.
Where it is running
- Memorial Sloan Kettering Cancer Center (All Protocol Activities) — New York, New York, United States (enrolling)
- Boston Children's Hospital (Data Analysis Only) — Boston, Massachusetts, United States
Full record on ClinicalTrials.gov
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