Nevus Outreach, Inc., The association for Large Nevi and related disorders.
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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:

New Categories Proposed To Classify Congenital Melanocytic Nevi

In a paper accepted for publication in an upcoming issue 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, propose 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 health care 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 and 2014 conferences.

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. Read more about DNA research here.

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 hope to many families of people affected by large nevi.  To have your MRI read by Dr. Barkovich, send it on CD to: MRI Study, c/o Nevus Outreach, 600 S. Delaware Ave - Suite 200,  Bartlesville OK 74003, USA.  We will send it to Dr. Barkovich and when he sends us back the report we will send it to you.  The process usually takes about 3 weeks.  Note: only people who have filled out the registry can use this service.  If you have not filled out the registry, we will contact you to let you know, and after you have filled out the registry then we will forward your MRI on to Dr. Barkovich.

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 continues to be refined, with an all-new web-based interface coming online in January 2011.

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
  • 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.

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