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The VASCERN-VASCA working group diagnostic and management pathways for lymphatic malformations.

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dc.contributor.authorGhaffarpour, Nader
dc.contributor.authorBaselga, Eulalia
dc.contributor.authorBoon, Laurence M
dc.contributor.authorDiociaiuti, Andrea
dc.contributor.authorDompmartin, Anne
dc.contributor.authorDvorakova, Veronika
dc.contributor.authorEl Hachem, May
dc.contributor.authorGasparella, Paolo
dc.contributor.authorHaxhija, Emir
dc.contributor.authorKyrklund, Kristiina
dc.contributor.authorIrvine, Alan D
dc.contributor.authorKapp, Friedrich G
dc.contributor.authorRössler, Jochen Karl
dc.contributor.authorSalminen, Päivi
dc.contributor.authorvan den Bosch, Caroline
dc.contributor.authorvan der Vleuten, Carine
dc.contributor.authorKool, Leo Schultze
dc.contributor.authorVikkula, Miikka
dc.date.accessioned2024-10-11T17:22:49Z
dc.date.available2024-10-11T17:22:49Z
dc.date.issued2022-12
dc.description.abstractLymphatic malformations (LMs) are developmental defects of lymphatic vessels. LMs are histologically benign lesions, however, due to localization, size, and unexpected swelling, they may cause serious complications that threaten vital functions such as compression of the airways. A large swelling of the face or neck may also be disfiguring and thus constitute a psychological strain for patients and their families. LMs are also highly immunologically reactive, and are prone to recurrent infections and inflammation causing pain as well as chronic oozing wounds. The European Reference Network on Rare Multisystemic Vascular Diseases (VASCERN) is dedicated to gathering the best expertise in Europe. There are only few available guidelines on management and follow up of LMs, which commonly focus on very specific situations, such as head and neck LM (Zhou et al., 2011). It is still unclear, what constitutes an indication for treatment of LMs and how to follow up the patients. The Vascular Anomalies Working Group (VASCA-WG) of VASCERN decided to develop a diagnostic and management pathway for the management of LMs 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 2 face-to-face meetings and multiple web meetings to facilitate discussion, and by mail to avoid the influence of most authoritative members. The VASCA-WG has produced this opinion statement reflecting strategies developed by experts and patient representatives on how to approach patients with lymphatic malformations in a practical manner; we present an algorithmic view of the results of our work.
dc.description.sponsorshipUniversitätsklinik für Kinderheilkunde
dc.identifier.doi10.48350/173698
dc.identifier.pmid36223836
dc.identifier.publisherDOI10.1016/j.ejmg.2022.104637
dc.identifier.urihttps://boris-portal.unibe.ch/handle/20.500.12422/88046
dc.language.isoen
dc.publisherElsevier
dc.relation.ispartofEuropean journal of medical genetics
dc.relation.issn1878-0849
dc.relation.organizationDCD5A442BADAE17DE0405C82790C4DE2
dc.relation.organizationDCD5A442BB22E17DE0405C82790C4DE2
dc.subjectAlpelisib Interventional radiology Lymphatic malformation Management PIK3CA Patient pathway Sclerotherapy Sirolimus Surgery Treatment algorithm Vascular malformation
dc.subject.ddc600 - Technology::610 - Medicine & health
dc.titleThe VASCERN-VASCA working group diagnostic and management pathways for lymphatic malformations.
dc.typearticle
dspace.entity.typePublication
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oaire.citation.issue12
oaire.citation.startPage104637
oaire.citation.volume65
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oairecerif.author.affiliationUniversitätsklinik für Kinderheilkunde
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unibe.date.licenseChanged2022-10-13 12:51:41
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unibe.eprints.legacyId173698
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