Supporting Scientific Research Efforts


One of the most important aspects of Nevus Outreach, Inc. is our ongoing effort to direct resources toward scientific research of Large Congenital Melanocytic Nevi. Our goal is to find a cure and to do that we need to understand more about large nevi and what causes them.

These are a few of the science and nevus information projects Nevus Outreach is involved in:

2018-2019 Project Grants

Nevus Outreach has funded three projects for this grant cycle. 

  • The development and management of a NCM registry beginning at Memorial Sloan Kettering and over time incorporating clinics across North America. They plan to leverage data gathered to develop clinical trials for patients with NCM.
  • A project to test HDAC inhibitors in vitro as potential drug candidates for L/GCMN conducted at the Rangos Research Center, Children’s Hospital of Pittsburgh of UPMC Department of Pathology, University of Pittsburgh
  • Partially fund a PeDRA project to gather experts during the 2019 AAD meeting for the purpose of producing evidence-based expert consensus recommendations for care of children with congenital melanocytic nevi (CMN) in the newborn period.

Nevus Outreach will set 2019 priorities in the first quarter and will solicit Letters of Inquiry in the third quarter of 2019 for the 2019-2020 grant cycle. 

New Categories Proposed To Classify Congenital Melanocytic Nevi

In Volume 68, Issue 3 (March 2013) of the Journal of the American Academy of Dermatology, Sven Krengel, MD, Ash Marghoob, MD, and their colleagues in Europe, Israel, and the United States, proposed a new consensus classification for congenital melanocytic nevi (CMN). Read more about the proposed classifications here.

2011 International Expert Meeting for Large Congenital Melanocytic Nevi and Neurocutaneous Melanocytosis Resounding Success

Nearly 100 healthcare professionals and patient advocates met for the 2011 International Conference at the University of Tübingen, in Germany, on Friday through Sunday, May 6-8, to discuss the research, management, and possible future therapies for individuals with a large congenital melanocytic nevus (LCMN) and neurocutaneous melanocytosis (NCM). A major focus as well, was to provide psychological support for families.

The focal point of the conference, which was hosted by Department of Dermatology, University of Tübingen, was the meeting with experts on Friday afternoon and all day Saturday, during which some two dozen experts discussed some aspect of care for individuals born with a giant nevus.

Total Body Photography

Dermatologists have always prescribed Total Body Photography (TBP) to their patients with large nevi. It is the best way to manage the constant watch for changes in their nevi. Unfortunately, it is an expensive procedure, and most insurance companies don’t cover it. Nevus Outreach contracted with DermaTrak Imaging Centers, a division of Canfield Scientific, the leaders in computer-aided digital analysis of skin imaging, to provide this as a free service to any patient at the 2010 Nevus Outreach Conference. Our goal was two-fold: First, we wanted to make the service available to people who need it. Second, we wanted to begin building a library of high-resolution digital images of large nevi for scientific use. We photographed 69 patients. As a result of this success, a formal agreement has been struck between Nevus Outreach and Canfield Scientific to offer this service at the 2012, 2014,2016 and 2018 conferences.

Blood Drives

The 2010 Nevus Outreach International Conference saw many firsts. Among them, it was the first time in history that a sampling of blood was given from so many with large nevi, and from their family. 123 blood samples were taken that will provide invaluable information to researchers.

Having samples not only from those with the nevus but also from their family members means comparisons can be made that were never before possible. The number of samples taken means that commonalities can be found and discoveries made.

This project, which included samples from 62 persons with CMN and 61 of their relatives, was characterized as “unprecedented” by Heather Etchevers, Ph.D., the chief science officer of the French congenital nevus association Nevus 2000 France-Europe, and a researcher for INSERM, France’s equivalent to the USA’s NIH. There she studies developmental biology, with a keen interest in how cells acquire their identity and how organisms develop over time. Dr. Etchevers went on to say “this is the largest cohort of patients in the United States with this condition to ever have their DNA analyzed.” Dr. Etchevers, one of the guest speakers at the conference, is also mother to Marjorie, a 10 year old girl with a large nevus.

Genomic Analysis

Our 2010 Conference afforded the unique opportunity to collect DNA from a substantial number of people affected by large nevi. Dr. Heather Etchevers, a scientist at France’s National Institute of Health and Medical Research, contacted Nevus Outreach about the feasibility of such a collection attempt. Nevus Outreach acted to make Dr. Etchevers’ idea a reality. When the conference was over, we shipped vials of blood from 62 people with large nevi and 61 of their closest relatives to Paris for separating out their DNA. In late 2010, DNA from this study was given to Dr. Greg Barsh, Professor of Genetics and Pediatrics for Stanford University, and Faculty Investigator with the HudsonAlpha Institute for Biotechnology, for next-generation high-throughput genomic analysis. This project represents by far the most extensive genetic study of people with large nevi that has ever been done. 

MRI Study

Dr. James Barkovich, Professor of Radiology, Pediatrics, Neurology and Neurosurgery in Residence, University of California, San Francisco, is regarded as the foremost expert in detecting neurocutaneous melanocytosis (NCM) using non-invasive magnetic resonance imaging (MRI). He created and continues to perfect techniques that are revolutionizing the diagnosis of this confounding condition. Download Dr. Barkovich's MRI instructions here.  Since 2008, by formal arrangement between the University of California and Nevus Outreach, Dr. Barkovich is able to read the MRIs of children with large nevi to determine if they have NCM, and when they do, where it is and how large it is. This has brought comfort and hopes to many families of people affected by large nevi.  Dr. Barkovich is retiring this year and we are actively seeking someone who would like to take over his work. We will let you know when the project will resume. For the time being, please do not send your MRIs to the Nevus Outreach office for review. 

The Nevus Registry

Nevus Outreach co-founder Kevin Williams had a dream of using the internet to collect data on people with large nevi. In collaboration with Dr. Ashfaq Marghoob, Director of the Memorial Sloan-Kettering Cancer Center’s Skin Cancer Clinic in New York, we have collected data on over 1000 people with large nevi and published findings. This process continued to be refined, with an all-new web-based interface launched in January 2011. In 2018, the Nevus Registry was discontinued.

Tissue Bank

Since we founded Nevus Outreach in 1996, we have wanted to collect the excised melanocytic lesions of people with large nevi when it is removed from their bodies. In 2010 we continued to move toward this goal. Governmental regulations make this a challenge, but it is one worth tackling. Dr. Miguel Reyes-Múgica, Chief of Pediatric Pathology at the University of Pittsburgh School of Medicine, has undertaken this task, and the necessary Internal Review Board certification (IRB) is now in place. Now nevus tissues held all over the USA will start moving toward one central location.

Searching to Conquer

Searching to Conquer is a project we began in 2006. Researcher Dr. Bernhard Wehrle-Haller in the Department of Cellular Physiology and Metabolism at the University of Geneva in Switzerland had already patented three mechanisms for affecting the cells that make up a large nevus, funded by a Swiss pharmaceutical company. Funding for this project ended unexpectedly, and Nevus Outreach was in the right place at the right time to pick up the slack. We were pleased to announce in May 2011, that we had secured the funding for another year. (more)

Nevus Outreach offers an MRI scan read by Dr. James Barkovich of the University of California.


Science Funding Overview

A quick overview of funding needs for ongoing projects in 2011 and beyond:

Total Body Photography

Will require approximately $8,000 per year for four years.

Genomic Analysis

The anticipated cost for completion of project: $80,000.

MRI Study

Requires approximately $15,000 per year.

Nevus Registry

$23,000 per year for 5 years to validate existing data and collect new data worldwide.

Tissue Bank

Approximately $50,000 to finish building it.

Searching to Conquer

Budgeted at $170,000 for 2012.