VEDS Publications
A unique collaborative model providing supportive and self-advocacy tools
to the rare disease community
Despite celiprolol therapy, patients with vascular Ehlers–Danlos syndrome remain at risk of vascular events: A 12-year experience in an Italian referral center
Reproductive decision-making and the utilization of preimplantation genetic testing among individuals with inherited aortic or vascular disease
Diagnosis and management of vascular Ehlers-Danlos syndrome: Experience of the UK national diagnostic service, Sheffield
An exemplary model of genetic counselling for highly specialised services
Assessment of arterial damage in vascular Ehlers-Danlos syndrome: A retrospective multicentric cohort
Evaluating perinatal and neonatal outcomes among children with vascular Ehlers–Danlos syndrome
Sara B. Stephens, Melissa Russo, Sherene Shalhub, Taylor Beecroft, Justin Weigand, Dianna M. Milewicz, Shaine A. Morris.
Published 20th August 2022.
Surveillance and monitoring in vascular Ehlers-Danlos syndrome in European Reference Network for Rare Vascular Diseases (VASCERN)
Adults with Loeys-Dietz syndrome and vascular Ehlers-Danlos syndrome: a cross sectional study of patient experiences with physical activity
Heidi Johansen, Gry Velvin and Ingeborg Lidal.
Published 11th September 2020.
Setting a research agenda for vascular Ehlers-Danlos syndrome using a patient and stakeholder engagement model
Targetable cellular signalling events mediate vascular pathology in vascular Ehlers-Danlos syndrome
Clinical Updates: Ehlers-Danlos syndromes
Assessment of the information sources and interest in research collaboration among individuals with vascular Ehlers-Danlos syndrome
A multi-institutional experience in vascular Ehlers-Danlos syndrome diagnosis
Vascular Ehlers-Danlos Syndrome Long-Term Observational Study
Atypical COL3A1 variants (glutamic acid to lysine) cause vascular Ehlers–Danlos syndrome with a consistent phenotype of tissue fragility and skin hyperextensibility
Diagnosis, natural history, and management in vascular Ehlers–Danlos syndrome
Arterial complications of vascular Ehlers-Danlos syndrome
Matthew J. Eagleton, MD
Published December 2016.
Effect of celiprolol on prevention of cardiovascular events in vascular Ehlers-Danlos syndrome: a prospective randomised, open, blinded-endpoints trial
Kim-Thanh Ong, Jérôme Perdu, Julie De Backer, Erwan Bozec, Patrick Collignon, Joseph Emmerich, Anne-Laure Fauret, Jean-Noël Fiessinger, Dominique P Germain, Gabriella Georgesco, Jean-Sebastien Hulot, Anne De Paepe, Henri Plauchu, Xavier Jeunemaitre, Stéphane Laurent, Pierre Boutouyrie.
Published 7th Septmeber 2010.
Gastrointestinal
- Spontaneous pneumothorax and hemothorax frequently precede the arterial and intestinal complications of vascular Ehlers–Danlos syndrome
- Spontaneous Colon Perforations Associated with a Vascular Type of Ehlers-Danlos Syndrome
- Increased Need for Gastrointestinal Surgery and Increased Risk of Surgery-Related Complications in Patients with Ehlers-Danlos Syndrome: A Systematic Review
- Natural history of gastrointestinal manifestations in vascular Ehlers-Danlos syndrome: A 17-year retrospective review
Genetics
- Atypical COL3A1 variants (glutamic acid to lysine) causevascular Ehlers–Danlos syndrome with a consistentphenotype of tissue fragility and skin hyperextensibility
- Survival is affected by mutation type and molecular mechanism in vascular Ehlers–Danlos syndrome (EDS type IV)
- Next-generation sequencing and a novel COL3A1 mutation associated with vascular EDS with severe intestinal involvement: a case report
- Haploinsufficiency of the murine Col3a1 locus causes aortic dissection: a novel model of the vascular type of Ehlers–Danlos syndrome
- The type of variants at the COL3A1 gene associates with the phenotype and severity of vascular Ehlers–Danlos syndrome
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