Neurocutaneous melanocytosis
What is Neurocutaneous melanocytosis?
Neurocutaneous melanocytosis (NCM) is a rare disease that develops before birth. It is characterized by pigmented tumors in the brain and large pigmented spots or lesions called large/giant congenital nevi on skin. Affected population is mostly children.
Synonyms
- CMN syndrome
- Neurocutaneous melanosis
Neurocutaneous melanocytosis (NCM) is a rare disease that develops before birth. It is characterized by pigmented tumors in the brain and large pigmented spots or lesions called large/giant congenital nevi on skin. Affected population is mostly children.
NCM is found in 1 in 50,000 to 200,000 births. One-third of these patients are symptomatic.
| Name | Abbreviation |
|---|---|
| CMN syndrome | CMN syndrome |
| Neurocutaneous melanosis | Neurocutaneous melanosis |
| Name | Description |
|---|---|
| Seizures | Seizures |
| Nausea and vomiting | Nausea and vomiting |
| (R) Developmental Delays | Development Delays vary |
Magnetic resonance imaging of the brain often is recommended in patients born with large or giant nevi.
Radiation, surgery where possible and chemotherapy. However, there is no specific chemotherapy available for these patients.
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Clinical Trials
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
- Complete the screening form.
- Review the informed consent.
- Answer the permission and data sharing questions.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
Community Leaders
basud
I am a molecular cell biologist interested to study molecular mechanisms underlying the development and progression of large/giant congenital nevi and Neurocutaneous melanocytosis.
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I am a molecular cell biologist interested to study molecular mechanisms underlying the development and progression of large/giant congenital nevi and Neurocutaneous melanocytosis.
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