From Mark Beckwith, Executive Director, Nevus Outreach, Inc: If you would like to give us the opportunity to do more of this kind of work, here's how you can help.
By Patricia McAdams, Staff Writer, Nevus Outreach
Mark Beckwith talks with an attendee.
Ashfaq Marghoob was sought at every opportunity.
Patient Association representatives Janny Prooj (Netherlands), Juliane Stubbe (Germany), Ferdie Keizers (Netherlands) and Stefan Wilms (Netherlands)
Tübingen is a picturesque medieval city.
Nearly 100 health care professionals and patient advocates met at the University of Tübingen, in Germany, on Friday through Sunday, May 6-8, for the 2011 International Expert Meeting 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.
Mark Beckwith, director of Nevus Outreach, Inc., worked closely with physicians in Europe and the United States to coordinate this huge effort and turn this conference into a reality.
“This is the closest international collaboration ever of doctors and patients, and great things have come out of it, as we anticipated,” he said.
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.
The experts’ sessions
Experts spoke with passion about their specific niches, describing their work and challenges, whether in the laboratory, operating room, clinic, or beyond. We viewed hundreds of photos, several videos, and learned of countless goals from searching for genes related to LCMN, to surgically removing a nevus, to one day perhaps blocking the replication of melanocytes — the cells that make up LCMN and NCM.
A global registry
Possibly the most important initiative resulting from this conference is the commitment to move ahead on a cooperative international registry of individuals with LCMN and NCM. In a presentation prepared by Ashfaq Marghoob, MD, Memorial Sloan-Kettering Cancer Center, New York, doctors were reminded about the power of epidemiology in evaluating the risk of disease and better distinguishing between absolute and relative risk. Marghoob said there is no registry today that is even close to giving us the information and evidence-based research needed to move ahead in understanding this rare disease.
While recognizing the many hurdles that lie ahead in deciding how to create a global registry, identifying who has ownership, and who will monitor legitimacy and validation issues and more, Marghoob urged a unified group to move ahead with this venture. Collaboration has always had a positive effect, he said. The more we share, the faster we will learn.
Veronica Kinsler, MD, Great Ormond Street Hospital, London, has agreed to serve as Director of the Worldwide Initiative.
The overall goal of this registry is that every person in the world with LCMN would be included. In addition to including written data about each individual, a long-term goal will be to include blood and tissue samples. Repositories of some of these samples are already in place in several locations throughout the world, where DNA analyses and other research is already underway. Physicians agreed that this registry would have huge research value going forward.
The stigma study
Among the most animated of the conference discussions was the one that followed presentation of preliminary findings of a study of stigma experiences. These findings were presented by psychologist Ornella Masnari, University Children’s Hospital, Zurich, Switzerland. In reporting on this study, which included children with facial deformities such as burns or a giant nevus, Masnari said that these children are perceived less favorably than other children. Children experiencing high stigmatization tend to have a much higher risk of behavioral and emotional problems. And parents might underestimate their child’s stigma experiences.
In response to these findings, one clinician noted that the psychosocial issue is much bigger than the medical issue, but it is usually brushed aside, because of the concentration on medical concerns. Many parents think if you “fix the child,” all psychological challenges will go away. He added that when he is meeting with families, he suggests that they see a psychologist, as well. He could count with one hand, however, the number of families who take his suggestion. They don’t want to face psychological issues, he said. Instead, they focus on medical procedures, because it makes them feel as though they are in control.
Another doctor talked about raising awareness, in general, and challenging negative attitudes toward anyone with disfigurements. Many agreed with this approach, nevertheless pointing out that it is an illusion to think we can change the world. It’s just too big. A better goal may be to change the child’s world. Help individuals with a nevus learn to cope in a world that is different from everyone they meet. Experts touched on some interventions that might help. Because, ultimately, children will be influenced by the people who bring them up, educating and supporting parents is especially important.
In concluding this session, everyone agreed that stigma is a significant factor and we should pay more attention to psychological issues.
Satellite parents’ sessions
In addition to the dozens of doctors who attended this meeting, about 75 individuals affected by a nevus traveled from throughout Germany, across Europe, and as far away as Australia to participate in this international meeting of experts. These individuals represented 11 existing patient organizations in 14 countries. Members of these groups gathered several times from Friday evening through Sunday morning and many listened in on the expert sessions, as well.
One global Web site
One of the parents from The Netherlands was the first to propose designing some kind of international nevus health resource, pointing out that individual country groups shouldn’t need to reinvent the wheel, but should be able to share resources. In no time, all present agreed that a major initiative resulting from this meeting would be to establish not a new global organization, but a new a global Web site.
Pierre Gremillion, former chairman, Board of Directors, Nevus Outreach, Inc., who has a son with a large nevus, suggested that this single global Web site should be a clearinghouse for every nevus Web site on the planet. A goal should be to keep it simple, user-friendly, and patient driven. The site would be a universal portal that you can easily search.
“The home page would list every nevus organization worldwide and link to that site, with the latest information translated into as many languages as we can,” he said.
“There could be a “Global Registry” button to connect to the new worldwide registry initiative. And there could be a “What’s New” button, where you could learn about the latest research or an upcoming meeting. The home page would rotate to give equal time to each nevus organization.”
According to Gremillion, this worldwide registry would have a standardized platform, designed by physicians, to ensure that they have the data they need for research.
Parents and doctors alike were enthusiastic about this initiative. While everyone agreed to move forward in developing this platform, however, there was some difference of opinion as to all it should include. Specifically, those present disagreed on whether the proposed site should include standard of care guidelines.
From a patient perspective, in particular, patient guidelines and flow charts are desirable. Some physicians, however, argued that each child is unique. It is important that the care of each person with LCMN must be based on individual needs — not on general guidelines that could be misleading in certain cases.
While such issues need to be resolved in the months ahead, everyone agreed that this proposed global Web site needs a stream of good information — but will stress individual counsel in interpreting the information online.
At the conclusion of the conference, one physician excitedly commented on the amazing levels of energy and enthusiasm emanating from the group. “It has so much horsepower in it that it will make heads spin, as things begin to happen,” he said.
This conference was supported by the Department of Dermatology at the University of Tübingen, the National Institutes of Health, and the Morgan Family Foundation. Valérie Morgan, who attended the meeting, and who has a daughter with a large congenital nevus, says that her family was eager to do whatever they could to enable experts working in this field to simply be able to talk to one another.
In addition to the assistance and generous funding from these various sources, however, this important international meeting of LCMN health care professionals and patient advocates could never have occurred without the individual contributions of countless families within Nevus Outreach.
“The major funders only covered three-quarters of the event budget,” says Beckwith. “The remaining $20,000 or so was paid for by hundreds of donations, one-at-a-time, from supporters of Nevus Outreach.”
Addressing the closing session for the patient associations, Beckwith said that sharing experiences improves the quality of information available to everyone. He talked of the importance of moving ahead with a global health resource — in part because a giant nevus is such a rare disorder that in many parts of the world, parents know more than doctors.
“It is up to us to teach the doctors,” he says. “That’s why we are here today. So we have adopted the idea of a global Web site with a global registry and carried it some distance.
“Now we need to brainstorm how to proceed. We invite you to join us as a world affected by nevi.”
Nevus Outreach is pleased to announce that the journal Pigment Cell and Melanoma Research will be publishing a report of the proceedings of the 2011 Expert Meeting held in Germany, co-authored by Sven Krengel and Helmut Breuninger, the two doctors who hosted the meeting at the University of Tübingen, Heather Etchevers, the research scientist in France who chaired the 2002 Expert Meeting, an early precursor to this meeting, and who designed the meeting with Drs. Krengel and Breuninger, and Mark Beckwith, Executive Director of Nevus Outreach in the USA, who funded the meeting.
If you would like to give us the opportunity to do more of this kind of work, here's how you can help.