title: Clinical course, treatment modalities, and quality of life in patients with congenital melanocytic nevi - data from the German CMN registry.
abstract: BACKGROUND
  Congenital melanocytic nevi (CMN) are associated with mental stress as well as medical risks for those affected. The German CMN registry was initiated in 2005. Herein, we present results from an interim analysis focusing on disease course, treatment modalities, and quality of life.
  
  
  METHODS
  One hundred patients enrolled in the registry between 2005 and 2012 were included in this prospective cohort study, and asked to participate in a follow-up survey. In addition, standardized questionnaires were used to collect data on quality of life (dermatology life quality index, DLQI) and perceived stigmatization (perceived stigmatization questionnaire, PSQ; social comfort questionnaire, SCQ).
  
  
  RESULTS
  Eighty-three percent of patients (or their parents) provided answers to the survey questions (mean patient age: 11.2 years, median: 6 years; mean follow-up: 4.4 years). Overall, four individuals were diagnosed with melanoma, including two pediatric cases with CNS melanoma, one adult with cutaneous melanoma, and one case which later turned out to be a proliferative nodule. Four children were diagnosed with neurocutaneous melanocytosis, three of whom exhibited neurological symptoms. Eighty-eight percent (73/83) of patients underwent surgery. Seventy-eight percent reported no or only minor impact of the CMN on quality of life. In general, perceived stigmatization and impairment of social well-being were also low.
  
  
  CONCLUSIONS
  Our results provide an overview of the situation of CMN patients in Germany, Austria, and Switzerland. Three percent of patients developed melanoma; 4 % showed CNS involvement.
authors.affiliation: Department of Dermatology, University of Lübeck, Germany.
authors.forename: Maria
authors.initials: M
authors.lastname: Elisabeth Wramp
authors.affiliation: Institute for Health Care Research, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
authors.forename: Anna
authors.initials: A
authors.lastname: Langenbruch
authors.affiliation: Institute for Health Care Research, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
authors.forename: Matthias
authors.initials: M
authors.lastname: Augustin
authors.affiliation: Department of Dermatology, University of Lübeck, Germany.
authors.forename: Detlef
authors.initials: D
authors.lastname: Zillikens
authors.affiliation: Department of Dermatology, University of Lübeck, Germany.|Joint Dermatology Practice, Lübeck, Germany.
authors.forename: Sven
authors.initials: S
authors.lastname: Krengel
mesh_terms: D000293:Adolescent; D000328:Adult; D017677:Age Distribution; D001317:Austria / Q000453:epidemiology; D002648:Child; D002675:Child, Preschool; D015331:Cohort Studies; D015897:Comorbidity; D062109:Dermatologic Surgical Procedures / Q000523:psychology / Q000706:statistics & numerical data*; D005260:Female; D005858:Germany / Q000453:epidemiology; D019538:Health Care Surveys; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D009422:Nervous System Diseases / Q000453:epidemiology / Q000523:psychology*; D009508:Nevus, Pigmented / Q000453:epidemiology / Q000523:psychology* / Q000628:therapy*; D015995:Prevalence; D011788:Quality of Life / Q000523:psychology*; D012042:Registries; D012307:Risk Factors; D017678:Sex Distribution; D012878:Skin Neoplasms / Q000453:epidemiology / Q000523:psychology* / Q000628:therapy*; D013240:Stereotyping; D013557:Switzerland / Q000453:epidemiology; D016896:Treatment Outcome; D055815:Young Adult