4.1 Article

The VASCERN-VASCA working group diagnostic and management pathways for severe and/or rare infantile hemangiomas

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出版社

ELSEVIER
DOI: 10.1016/j.ejmg.2022.104517

关键词

Infantile hemangioma; Diagnosis; Management; Algorithm; PHACES syndrome; LUMBAR; PELVIS; SACRAL syndrome; Multifocal hemangiomas; Large segmental hemangiomas

资金

  1. European Reference Network on Rare Multisystemic Vascular Diseases (VASCERN) [769036]
  2. European Union
  3. Third Health Programme ERN-2016-Framework Partnership Agreement 2017-2021

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The European Reference Network on Rare Multisystemic Vascular Diseases (VASCERN) aims to provide accessible cross-border healthcare to patients with rare vascular diseases. Infantile Hemangiomas (IH) are benign vascular tumors that can cause severe complications in rare cases. Certain publications focus on evidence-based medicine for IH treatment, while consensus statements mainly concentrate on managing rare IH associated with PHACES syndrome.
The European Reference Network on Rare Multisystemic Vascular Diseases (VASCERN), is dedicated to gathering the best expertise in Europe and provide accessible cross-border healthcare to patients with rare vascular dis-eases. Infantile Hemangiomas (IH) are benign vascular tumors of infancy that rapidly growth in the first weeks of life, followed by stabilization and spontaneous regression. In rare cases the extent, the localization or the number of lesions may cause severe complications that need specific and careful management. Severe IH may be life-threatening due to airway obstruction, liver or cardiac failure or may harbor a risk of functional impairment, severe pain, and/or significant and permanent disfigurement. Rare IHs include syndromic variants associated with extracutaneous abnormalities (PHACE and LUMBAR syndromes), and large segmental hemangiomas. There are publications that focus on evidence-based medicine on propranolol treatment for IH and consensus state -ments on the management of rare infantile hemangiomas mostly focused on PHACES syndrome. The Vascular Anomalies Working Group (VASCA-WG) decided to develop a diagnostic and management pathway for severe and rare IHs with a Nominal Group Technique (NGT), a well-established, structured, multistep, facilitated group meeting technique used to generate consensus statements. The pathway was drawn following two face-to-face

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