Neurocutaneous Melanocytosis Registry

Sponsor

Memorial Sloan Kettering Cancer Center (Other)

Overall Status

Recruiting

CT.gov ID

NCT04548817

Collaborator

(none)

Enrollment

Location

Anticipated Duration (Months)

0.9

Patients Per Site Per Month

Study Details

Study Description

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).

Condition or Disease	Intervention/Treatment	Phase
Cutaneous Melanocytic Neoplasm Large Cutaneous Melanocytic Nevi Neurocutaneous Melanocytosis

Study Design

Study Type:

Observational [Patient Registry]

Anticipated Enrollment :

75 participants

Observational Model:

Cohort

Time Perspective:

Prospective

Official Title:

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

Actual Study Start Date :

Sep 3, 2020

Anticipated Primary Completion Date :

Sep 3, 2027

Anticipated Study Completion Date :

Sep 3, 2027

Arms and Interventions

Arm	Intervention/Treatment
Neurocutaneous Melanocytosis Participants will have Neurocutaneous Melanocytosis (NCM) Including Cutaneous and CNS Involvement

Outcome Measures

Primary Outcome Measures

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

Eligibility Criteria

Criteria

Ages Eligible for Study:

N/A and Older

Sexes Eligible for Study:

All

Accepts 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.