The VASCERN-VASCA Working Group Diagnostic and Management Pathways for Capillary Malformations
(2025) Journal of Vascular Anomalies — Vol. 6, n° 1, p. e102 (2025)
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- Authors
- Abstract
- Objective: VASCERN (https://vascern.eu/) is the European Reference Network for Rare Multisystemic Vascular Diseases. VASCERN-VASCA is the working group within VASCERN that focuses on the study of vascular anomalies. One of the objectives of this group is to establish patient pathways to guide physicians toward efficient diagnostic and management measures. The patient pathway presented here is focused on capillary malformations (CMs). Methods: The Nominal Group Technique, a structured variation of small group discussion was used. Two facilitators were identified: one to propose initial discussion points and draw the pathway and another to chair the discussion. A dermatologist (E. Baselga) was chosen as the first facilitator due to her specific clinical and research expertise. The draft was subsequently discussed within VASCERN-VASCA monthly virtual meetings and biannual face-to-face meetings. Results: The pathway starts from the clinical recognition of a vascular red stain, describing clinical characteristics and location. Depending on the clinical features, a subsequent workup for associated manifestations or complications is suggested. These steps should enable the establishment of 6 subtypes of CMs: (1) nevus simplex; (2) isolated CM, syndromic or nonsyndromic; (3) CM of microcephaly CM syndrome; (4) CM of CM–arteriovenous malformation syndromes; (5) “pseudo” CM of arteriovenous malformation; (6) cutis marmorata telangiectatica congenita. Management according to the recognized phenotype is detailed in subsequent pages of the pathway. A color code is used to differentiate (1) clinical evaluations, (2) investigations, (3) associated genes, and (4) treatments. Actions relevant to all types are marked in separate boxes, for example, when to perform specific imaging.
- Affiliations
Hospital Sant Joan de Déu, Pediatric Dermatology Oslo University Hospital Department of Radiology and Nuclear Medicine Vascular Anomaly Patient Association AP-HP, Université de Paris, Hôpital Lariboisière, Centre Constitutif des Malformations Artério Veineuses Superficielles de l’Enfant et de l’Adulte Centro Hospitalar Universitário São João Pediatric Oncology Federal Association of Congenital Vascular Malformation Bundesverband Angeborene Gefäßfehlbildungen e.V. Bambino Gesù Children’s Hospital, IRCCS, Rome Dermatology Unit and Genodermatosis Unit CHU Caen Dermatology Department CHU Caen Université Trinity College Dublin Paediatric Dermatology, Children’s Health Ireland; Department of Molecular Medicine and Surgery Karolinska Institutet Karolinska University Hospital Department of Clinical Genetics, Karolinska University Laboratory Medical University of Graz Department of Paediatric and Adolescent Surgery Karolinska University Hospital, Stockholm, Department of Plastic and Craniofacial Surgery Copenhagen University Hospital Department of Otorhinolaryngology Medical Center - University of Freiburg, Faculty of Medicine Division of Pediatric Hematology and Oncology, Department of Pediatrics and Adolescent Medicine University of Helsinki and Helsinki University Hospital Department of Pediatric Surgery Centro Hospitalar Universitário São João Interventional Radiology Vilnius University Hospital Santaros Klinikos Faculty of Medicine University of Helsinki and Helsinki University Hospital Department of Internal Medicine Patient Organisation for Vascular Anomalies Hevas Expertise center for Vascular Anomalies
Citations
Baselga, E., Andersen, R., Barea, M., Bejarano Serrano, M., Berger, S., Bisdorff-Bresson, A., Boccara, O., Bom-Sucesso, M., Boon, L., Borgards, P., Diociaiuti, A., Dompmartin, A., Dvorakova, V., El Hachem, M., Frisk, S., Gasparella, P., Ghaffarpour, N., Haxhija, E., Hjuler, T., et al. (2025). The VASCERN-VASCA Working Group Diagnostic and Management Pathways for Capillary Malformations. Journal of Vascular Anomalies, 6(1), e102. https://doi.org/10.1097/jova.0000000000000102 (Original work published 2025)