Registry for patients with neurocutaneous melanocytosis and large cutaneous nevi

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational registry collects information on patients diagnosed with large cutaneous melanocytic nevi (LCMN) or neurocutaneous melanocytosis (NCM). It aims to gather data regarding the regular medical care these patients receive, including their clinical presentations and any associated conditions. The study includes patients of all ages and allows for the inclusion of deceased patients under specific conditions. The registry does not require mandatory pathology reviews for diagnosis confirmation if characteristic skin lesions are present.

Why it matters

Who can join: the full rules

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.

Where it's running

• Memorial Sloan Kettering Cancer Center (All Protocol Activities)
  New York, New York, United States Recruiting
• Boston Children's Hospital (Data Analysis Only)
  Boston, Massachusetts, United States Not yet recruiting

Study contacts

• Principal investigator: Yasmin Khakoo, MD — Memorial Sloan Kettering Cancer Center
• Study coordinator: Yasmin Khakoo, MD
• Email: khakooy@mskcc.org
• Phone: 212-639-8292

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.