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The Nevus Owners Outcomes Registry

Join the Nevus Owners Outcome Registry (NOOR) to share your journey living with a Nevus and its manifestations and play a critical role in creating a better tomorrow

for patients everywhere.

Vision for NOOR

The NOOR project's vision is to revolutionize the landscape of congenital melanocytic nevi (CMN) research and care.

Our long-term goal is to establish a comprehensive global registry and research platform that aggregates data and synthesizes it into actionable insights.

By engaging a wide network of supporters—from families and patients to world-class researchers and clinicians—we aim to deepen the understanding of CMN, uncovering its origins, progression, and optimal treatment pathways. This concerted effort will ideally lead to the development of targeted therapies and improved diagnostic tools, ultimately elevating the standard of care and quality of life for the CMN community.

The impact on CMN research will be profound. It will offer a clearer roadmap for future studies and interventions and ensure that those affected by CMN have access to the most advanced care options as soon as they become available.

 

This collaborative approach promises to manage CMN and change how it is perceived and treated on a global scale. In the long term, we'd like to be able to fund research grants for physicians interested in using the data collected in the registry to advance scientific research.

9 Facts About These Vital Surveys

  1. Collection of short surveys asking about your life and medical history.

  2. The average time to complete all surveys in one sitting is 45 minutes.

  3. You'll be able to give consent about how your de-identified answers are shared.

  4. NOOR follows strict government guidelines to ensure your information is protected.

  5. An Expert Advisory Board must approve researchers to access data.

  6. Participation is free and voluntary, and you can withdraw at any time

  7. Any adult or caregiver (of a child) diagnosed with a nevus can participate.

  8. Most comprehensive data collection in one secure location.

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