NCT04548817招募中不适用
Prospective Registry of Patients With Neurocutaneous Melanocytosis (NCM) Including Cutaneous and CNS Involvement
适应症
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 入组人数
- 100
- 试验地点
- 2
- 主要终点
- Collect retrospective and prospective clinical, treatment and outcome data about patients with Neurocutaneous Melanocytosis (NCM) worldwide
研究概览
简要总结
This study will involve collecting information about the regular medical care you receive for large cutaneous melanocytic nevi (LCMN) or neurocutaneous melanocytosis (NCM).
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •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.
排除标准
- •Informed consent has not been provided.
结局指标
主要结局
Collect retrospective and prospective clinical, treatment and outcome data about patients with Neurocutaneous Melanocytosis (NCM) worldwide
时间窗: Up to 7 years
次要结局
未报告次要终点
研究者
研究点 (2)
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