Large Congenital Melanocytic Nevus
What is Large Congenital Melanocytic Nevus?
A Large or Giant Congenital Melanocytic Nevus (plural: Nevi) is a pigmented lesion, substantial in size, either present at birth or very shortly after birth (within 2 years). These rare large birthmarks carry a small risk of neurological (brain) complications, and are presumed to increase the incidence of skin cancer compared to people who don't have them. Because people who have these "look different" psychological impacts can be great.
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| Title | Description | Date | Link |
|---|---|---|---|
| Nevus Outreach |
Nevus Outreach, Inc. is a non-profit organization that was founded by families affected by Large Nevi and Neurocutaneous Melanocytosis (NCM) to offer support and information to others who are similarly affected, improve awareness and education of the condition, and encourage and sponsor research that will lead to effective treatments and a cure. |
03/20/2017 |
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.
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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.
I am the CEO of Nevus Outreach, dedicated to improving awareness and providing support for people affected by large congenital melanocytic nevi and finding a cure.
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