Nevus Owners Outcomes Registry (NOOR)

The Nevus Owners Outcomes Registry (NOOR) collects disease-specific natural history data about individuals with congenital melanocytic nevi (CMN), with the goal of improving the understanding of congenital melanocytic nevi (CMN) and informing treatment development. Registry questionnaires were built from common data element standards and cover the following topics:

• Socio-demographics
• Medical history and diagnostics
• Treatment and disease progression
• Management of care
• Quality of life
• Clinical trial participation
• Developmental
• Psychosocial

We are interested in sharing our data with you! If you would like access to NOOR data for a research project, please contact our registry administrator at noor@nevus.org for more information. Access to NOOR data is contingent upon project approval by the Nevus Owners Outcomes Registry Advisory Board.