Expert consensus statements
Expert consensus statements play a critical role in guiding clinical decision-making and improving patient outcomes. Our experts in rare vascular diseases have developed consensus statements drawing from the latest research and clinical data to provide evidence-based recommendations for the diagnosis, treatment and management of these diseases.
You can choose from the research tool below to view available consensus statements by our Rare Disease Working Groups.
This document is based on the statement elaborated by ASPHO SIG (The American Society of Pediatric Hematology/Oncology Special Interest Group) and CaNVAS (Consortium of iNvestigators of Vascular AnomalieS), USA in December 2023, and further revised by the VASCERN (European Reference Network for Multisystemic Rare Vascular Diseases) VASCA (Vascular Anomalies) working group.
In patients with HTAD, Fluoroquinolones should be used with caution because of a possible risk for exacerbation of aortic disease. The use of alternatives is preferred while awaiting further evidence.
Ingrid M. B. H. van de Laar, Eloisa Arbustini, Bart Loeys, Erik Björck, Lise Murphy, Maarten Groenink, Marlies Kempers, Janneke Timmermans, Jolien Roos-Hesselink, Kalman Benke, Guglielmina Pepe, Barbara Mulder, Zoltan Szabolcs, Gisela Teixidó-Turà, Leema Robert, Yaso Emmanuel, Arturo Evangelista, Alessandro Pini, Yskert von Kodolitsch, Guillaume Jondeau, Julie De Backer. European reference network for rare vascular diseases (VASCERN) consensus statement for the screening and management of patients with pathogenic ACTA2 variants. Orphanet J Rare Dis 14,264 (2019) doi:10.1186/s13023-019-1186-2
The Pediatric and Primary Lymphedema (PPL) Working Group endorses the COVID-19 statement by the Lymphoedema Support Network.
Claire L. Shovlin, Carlo Sabba, Hans Jurgen Mager, Anette Kjeldsen, Ulrich Sure, Elisabetta Buscarini and Sophie Dupuis-Girod.
The VASCERN Medium Sized Arteries Working Group experts provided an opinion statement on vaccination for patients with vascular Ehlers-Danlos Syndrome (vEDS).
Eker OF, Boccardi E, Sure U, Patel MC, Alicante S, Alsafi A, Coote N, Droege F, Dupuis O, Fialla AD, Jones B, Kariholu U, Kjeldsen AD, Lefroy D, Lenato GM, Mager HJ, Manfredi G, Nielsen TH, Pagella F, Post MC, Rennie C, Sabbà C, Suppressa P, Toerring PM, Ugolini S, Buscarini E, Dupuis-Girod S, Shovlin CL. European Reference Network for Rare Vascular Diseases (VASCERN) position statement on cerebral screening in adults and children with hereditary haemorrhagic telangiectasia (HHT). Orphanet J Rare Dis. 2020 Jun 29;15(1):165. doi: 10.1186/s13023-020-01386-9. PMID: 32600364; PMCID: PMC7322871.
Initiated by the patient advocacy groups in Europe and the United States and their medical advisory teams and approved by the VASCA WG.
With the global spread of the novel coronavirus SARS Cov-2, causing COVID 19, the VASCERN Medium Sized Arteries Working Group experts echoed some of the WHO guidelines regarding the virus specific to the vascular Ehlers-Danlos Syndrome (vEDS) community.
Buscarini E, Plauchu H, Garcia Tsao G, White RI Jr, Sabbà C, Miller F, Saurin JC, Pelage JP, Lesca G, Marion MJ, Perna A, Faughnan ME. Liver involvement in hereditary hemorrhagic telangiectasia: consensus recommendations. Liver Int. 2006 Nov;26(9):1040-6. doi: 10.1111/j.1478-3231.2006.01340.x. PMID: 17032403.