In collaboration with the University of Amsterdam and researcher Ginger Beau Langbroek, MD, I am looking for participants with a port wine stain, or a parent of a child with a port wine stain too participate in this upcoming study regarding port wine stains:
'We are preparing on carrying out an international Delphi study for the development of a core outcome set for port wine stains (a.k.a. capillary malformations) as part of the international COSCAM project. Such a core outcome set contains a minimum set of outcomes that should be measured and reported in clinical studies on a specific health condition. An example of an outcome is ‘appearance’, ‘quality of life’ or ‘satisfaction with treatment’.'