Developing a Collaborative Network and Patient Driven Physician Verified Registry for Furthering the Science of Congenital Melanocytic Nevi (CMN) and Improving Patient Outcomes

Overview:

NOOR (Nevus Owners Outcomes Registry) seeks to better understand the diversity of experiences and outcomes for individuals living with congenital nevi (CMN). CMN are birthmarks made up of pigment cells called melanocytes. Based on size, location, and number, a person with CMN may have other health problems, like cancer or seizures. Doctors have more to learn about individuals living with CMN, like how people are affected physically and emotionally by their birthmarks. NOOR will collect health related information from individuals with CMN, allowing doctors to better understand how to care for them. This proposal provides dedicated time over 24 months for Dr. Price to enroll individuals with CMN into NOOR online, without having to travel to a doctor or medical center. Dr. Price will also work with Dr. Mangold, another doctor with NOOR, to ensure that the information collected is clear and useful for advancing CMN care for patients and families.

Status:

This project was funded by a 2024 Career Bridge Research Grant.