Vascular EDS Research
VEDS Research & Clinical Trials
This research study is looking at ways to help people affected by vascular Ehlers Danlos Syndrome (vEDS) to talk about the condition in their family.
Claire Green, Genetic Counsellor
UK adult patients genetically confirmed diagnosed vEDS.
Recruitment Closed
Understanding the barriers to diagnosis and care for patients with molecularly defined/rare EDS, including vEDS.
Colin Halverson, PhD, bioethicist.
The aim of this study is to examine the quality of life and social support of parents/guardians of people with Ehlers-Danlos Syndrome (EDS)/Hypermobility Spectrum Disorder (HSD).
Eloise Crowson, Master's Student, University of Surrey
Parent/guardian of a person with a formal diagnosis of EDS/HSD. Your child or dependent can be of any age (i.e. they can be a child or an adult). You also must live with or be in close contact to your child with EDS/HSD and not have a diagnosis of EDS/HSD yourself.
Recruiting
Investigating the oral manifestations of Ehlers Danlos Syndrome.
Jim Scott, Restorative Academic Clinic Fellow
UK adult patients genetically confirmed diagnosed vEDS or cEDS.
Recruitment Closed
Diagnosis and Management of Vascular Ehlers-Danlos syndrome: Experience of the UK National Diagnostic Service, Sheffield
EDS Service, Sheffield
Exploring how living with Vascular Ehlers-Danlos Syndrome affects partner relationships and family planning.
Angharad Cullinane, MSc Genetic and Genomic Counselling Student and Trainee Genetic Counsellor
UK adult patients genetically confirmed diagnosed vEDS.
Recruitment closed
Vascular EDS exercise and wellbeing research to test the effectiveness of a novel, online lifestyle intervention based on exercise for adults with vEDS.
Markos Klonizakis, Professor of Vascular and Clinical Physiology
UK adult patients genetically confirmed diagnosed vEDS.
Currently recruiting PhD student
The NEEDS study aims to increase knowledge about the clinical and genetic features of children and adults with rare types of EDS by having, amongst other things, a research database.
Dr Fleur van Dijk
UK adult patients genetically confirmed diagnosed rare EDS types.
Ongoing
VEDS Clinical Trial. The trial will study the investigational oral compound, enzastaurin, for its inhibition of the protein kinase C (PKC) pathway.
Aytu BioPharma
Zevra Therapeutics plans to conduct a clinical trial in the U.S. to evaluate the efficacy of a medicine known as celiprolol for the treatment of Vascular Ehlers-Danlos Syndrome (VEDS).
Zevra Therapeutics
Leanne Barrett, Genetic Counsellor
Exploring Vascular Ehlers-Danlos Syndrome Patients’ Perception of Diagnosis, Treatment, and Access to Ongoing Care.
Taylor Speziale, Charlotte Cowan & Kaitlyn Johnston, MSc Genetic and Genomic Counselling students.
Understanding the Utilization of PGT Among Individuals with Inherited Aortic or Vascular Disease.
Kaleigh Patton
Creation of VEDS Research Database at Northwick Park Hospital, London.
Dr Neeti Ghali & Dr Fleur van Dijk, Consultant clinical geneticists.
Natural history study to define the contribution of known VEDS gene mutations to VEDS complications and outcomes.
Dr Sherene Shalhub, Vascular Surgeon.
New Paper Published!
A unique collaborative model providing supportive and self-advocacy tools to the rare disease community.
Juliette M. Harris, Jacqui Fish, Jared Griffin, Gemma Hasnaoui, Clare Stacey, Neeti Ghali, Fleur S. van Dijk.
This is a great example of collaborative work of the EDS Service, a highly specialised service commissioned by NHS England and Annabelle's Challenge Vascular EDS Charity including health care professionals, patients, carers and members of the emergency care project team.
The recommendations from this unique collaborative model include eight specific domains of self-advocacy: increasing knowledge of rare disease, taking care of mental well-being, taking care of physical well-being including routine care, the development of good working relationships between patients and health care professionals, information accessibility, emergency preparedness, taking part in education and outreach, and involvement in research and feedback opportunities.
Highlights
Research Update
VEDS Steering Group
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