Naevus Global, in collaboration with Nevus Outreach and University Children’s Hospital Zurich, announces a comprehensive, world-wide study about the well-being of children and adolescents born with a congenital melanocytic nevus (CMN), and the well-being of their parents. This survey will provide important information about families and people who have CMN, with the goal of improving the quality of life for these people in the future.
Eligible for this study are parents of a child born with a nevus (from birth to 18 years old) and adolescents born with a nevus (ages 14-18 years). All families can participate, whether the nevus has been surgically removed or not. The input of each family and teenager is important.
To participate in this study, people who are affected by CMN will complete a web-based online survey.
Adolescents will be asked about their nevus and their well-being. Parents will be asked about their child’s and their own well-being. Participation in this survey will be completely voluntary and responses will remain anonymous. At any time, a person completing the survey will be able to exit without consequence.
The core research team consists of: Ornella Masnari, PhD, Psychologist; Kathrin Neuhaus, MD, Plastic Surgeon; Prof. Markus Landolt, PhD, Psychologist, PD Clemens Schiestl, MD, Plastic Surgeon at University Children's Hospital Zurich, Switzerland, and Shawn Reynolds, PhD, Psychologist, Sherwood Park, Canada.
Once the research team has collected enough data, the survey will be closed, and the team will analyze the data. According to Ornella Masnari, a psychologist at the University Children’s Hospital Zurich, “The input of each family and teenager is important.” Dr. Masnari is one of the lead researchers in this new study. Kathrin Neuhaus is the other. “A summary of the findings will be made available through the Nevus Global website. If enough data can be collected before June 1, 2016, the team plans to share a preview of preliminary data at the Nevus Outreach Conference.”
Michelle Sibbons, the President of Naevus Global, and Director of Nevus Support Australia, one of the most active nevus patient associations in the world, is very excited. “This is the perfect opportunity for people affected by congenital nevi to share their unique experiences and knowledge in a first rate scientific environment.” Sibbons is the mother of a teenage daughter who was born with a large CMN. “Naevus Global is proud to be a part of this initiative.”
This study is funded in part by Nevus Outreach through a generous gift from the Morgan Family Foundation. “We’re very glad to be able to move forward with this most important study,” Mark Beckwith, Chief Executive of Nevus Outreach, relates. Beckwith is also the parent of a teenage daughter who has a large CMN. “We spend so much time and energy on medical and biological questions, that I think it’s time to pay attention to what a day in the life of a person affected by a large nevus is really like.”
For more information about the study, you can contact the researchers directly at . If you want to get connected with other affected families, visit Naevus Global and Nevus Outreach. There you can find links to nevus patient associations throughout the world.