What we do
About our project
Background information
Recent studies indicate a lower malignant risk of CMN than previously thought. As surgery has not been proven to lower that risk, the question is whether extensive surgery still benefits the patient. As a lager CMN needs several, often painful operations, which not always improve the cosmetics outcome and may even give unwanted aesthetic and functional results. In addition, the child is exposed to anesthetics large skin areas are treated. Unfortunately, reliable data on patient-important outcomes ( like aesthetics, functionality, patient satisfaction, treatment-related quality of life) and risks of treatment are lacking.
Overall aim
Improving care for patients with congenital melanocytic nevi by developing standardized patient outcome measures.
Research method
By systematic literature searches, developing outcome measures together with patients with CMN and their parents, patient support groups and professionals nationally and internationally.
Desirable outcome
Treating patients with a CMN in the Netherlands in the same way according to multidisciplinary guideline. This treatment is based and will be evaluated on outcomes that have been proven to be clinically relevant.
- Guidline on CMN
- Laser therapy in CMN; systematic review
- Outcome of curettage therapy in CMN
- Outcome measures in CMN; systematic review
- Outcome measures (PROMs) in CMN
Publications
Landelijke Multidisciplinaire richtlijn congenitale nevi.
Zorg voor een kind geboren met een Giant Congenitale Melanocytaire Naevus (GCMN).
Incidence and relative survival of melanoma in children and adolescents in the Netherlands, 1989-2013.
Eggen CAM, Durgaram VVL, van Doorn R, Mooi WJ, Pardo LM, Pasmans SGMA, Hollestein LM. (2018). J Eur Acad Dermatol Venereol. 2018 Jun;32(6):956-961.
Laser treatment of congenital melanocytic naevi: a systematic review.
Eggen CAM, Lommerts JE, van Zuuren EJ, Limpens J, Pasmans SGMA, Wolkerstorfer A. (2018). Br J Dermatol. 2018 Feb;178(2):369-383.
Our team
- Suzanne Pasmans, MD, PhD, dermatologist/immunologist, professor in pediatric dermatology: Principal investigator
- Ida Korfage, PhD epidemiologist, HTA,
- Jolanda Okkerse, PhD, pediatric psychologist, project leader
- Carsten Lincke, MD, PhD pediatrician rare diseases
- Sarah Versnel. MD, PhD, plastic surgeon
- Luba Pardo Cortes, MD epidemiologist, postdoc
- Celine Eggen, MD, researcher
- Elke Clout, MD student
