The Nevus Outreach Registry
The Nevus Outreach Registry, the International Registry of large congenital melanocytic nevi and neurocutaneous melanocytosis (melanosis), is the only registry of its kind for large nevi and provides a growing source of statistical information about this rare condition. We feel this project is one of our most important endeavors and hope the information gathered will lead to a better understanding of large nevi, improve doctors' management of them, and shed light on cures and treatments.
The initial analysis of the Nevus Outreach Registry resulted in important findings, which have helped physicians understand large nevi better. Our data has been the basis of numerous peer-reviewed medical publications.
The Nevus Outreach Registry was designed by medical researchers and the information you provide will help further our understanding of large nevi. As with any rare disorder, your participation plays a key role in helping us further our knowledge in this area. Please take advantage of this opportunity to help in a way few people ever can.
Who should fill out the Nevus Outreach Registry?
You are encouraged to complete the Nevus Outreach Registry form if you are an adult or the parent or guardian of a person who:
- Has a congenital melanocytic nevus that measures more than 8 inches (20 centimeters) in diameter;
- Has a congenital melanocytic nevus that is expected to measure more than 8 inches (20 centimeters) in diameter when the person is fully grown;
- Has been diagnosed with neurocutaneous melanocytosis (melanosis) (NCM).
If any of these conditions are true, and the person with the large nevi or NCM is not an existing Nevus Outreach Registry member, please take the time to fill out the Nevus Outreach Registry questionnaire today. It is completely free.
How long will it take to complete the online registry form?
It may take 15 minutes or longer to complete the entire form.
Since we hope to gain significant insight into large nevi and NCM from the Nevus Outreach Registry, the form is intentionally detailed. When dealing with such a rare disorder, we hope you can appreciate the importance of your information and will take the time to fully complete the form. We have recently redesigned the entire form to make the process much more user friendly.
Should I update my existing Nevus Outreach Registry information?
Yes! If you are the contact for or are a person already listed in the Nevus Outreach Registry (a Nevus Outreach Registry member), please update your existing Registry information – especially if there have been changes to your medical or contact information.
Why should I fill out the Nevus Outreach Registry?
Of course, the most important reason for persons meeting the conditions listed above to fill out the Nevus Outreach Registry is our hope that the statistical information in the registry will provide the basis for a better understanding of large nevi and related disorders that could lead to improved treatments, prevention, awareness, and a cure!
Additionally, Nevus Outreach Registry members are automatically added to our mailing list and gain private access to special online features.
Will my information be kept confidential?
We fully respect the privacy of every person listed in the Nevus Outreach Registry, as well as those persons included as contacts.
All information is confidential, and will be released by Nevus Outreach only to medical researchers and other registry members with your approval. Please help us to improve our knowledge about large nevi and related disorders by providing this confidential information.
In the registry form, you will be able to indicate whether or not you wish to share contact information with other Nevus Outreach Registry members.