VEDS Research & Clinical Trials
VEDS Research
Research
MPEDS Study: Metabolic phenotyping in individuals with vascular Ehlers-Danlos Syndrome (vEDS) study will explore whether people with vEDS have any differences in the way their body stores and uses fat (adipose tissue), compared with people who do not have vEDS.
Lead Researcher
Dr Agnieszka Jakubowska, Clinical Research Associate/ Specialist Registrar (ST5) in Metabolic Medicine and Chemical Pathology at the University of Cambridge.
Eligibility
VEDS adult patients in the UK.
Status
Study in progress at Addenbrookes Hospital, Cambridge
Research
Health-related anxiety and quality of life in individuals with Vascular Ehlers-Danlos Syndrome and their families.
Lead Researcher
Holly Rawlings-Taylor, 3rd year student, University of Sussex.
Research
Conversations About vEDS: Adults’ reflections on first learning their diagnosis and how this was communicated in the family.
Lead Researcher
May Roberts, 3rd year MSc Genetic and Genomic Counselling student, Cardiff University.
Eligibility
VEDS adult patients and family members in the UK.
Status
Awaiting ethics approval
Research
Elucidating functional significance of ‘Variants of Uncertain Significance’ by generating and characterising a zebrafish model for Vascular Ehlers-Danlos Syndrome.
Lead Researcher
Prof Meena Balasubramanian, Consultant Clinical Geneticist and Senior Clinical Lecturer, University of Sheffield and Sheffield Children’s NHS Foundation Trust.
Research
Developing a lifestyle intervention programme aiming to support adults with vascular Ehlers Danlos Syndrome (vEDS)
Lead Researcher
Ian Thistlewood, Qualified Physiotherapist and PhD Student.
Research
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.
Lead Researcher
Claire Green, Genetic Counsellor, EDS National Diagnostic Service in Sheffield.
Eligibility
UK adult patients genetically confirmed diagnosed vEDS.
Status
Recruitment Closed
Research
Investigating the oral manifestations of Ehlers Danlos Syndrome.
Lead Researcher
Jim Scott, Restorative Academic Clinic Fellow at The University of Sheffield.
Eligibility
UK adult patients genetically confirmed diagnosed vEDS or cEDS.
Status
Recruitment Closed
Research
Diagnosis and Management of Vascular Ehlers-Danlos syndrome: Experience of the UK National Diagnostic Service, Sheffield.
Lead Researchers
EDS National Diagnostic Service, Sheffield Northern General Hospital.
Research
Exploring how living with Vascular Ehlers-Danlos Syndrome effects partner relationships and family planning.
Lead Researcher
Angharad Cullinane, Pre-Registration Genetic Counsellor at NHS Wales.
Eligibility
UK adult patients genetically confirmed diagnosed vEDS.
Status
Recruitment closed
Research
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.
Lead Researcher
Dr Fleur van Dijk, EDS National Diagnostic Service in London.
Eligibility
UK adult patients genetically confirmed diagnosed rare EDS types.
Status
Live
Research
What is the psychosocial impact of living with Vascular Ehlers-Danlos Syndrome?
Lead Researcher
Leanne Barrett, Genetic Counsellor, Great Ormond Street Hospital in London.
Research
Exploring Vascular Ehlers-Danlos Syndrome Patients’ Perception of Diagnosis, Treatment, and Access to Ongoing Care.
Lead Researchers
Taylor Speziale, Charlotte Cowan & Kaitlyn Johnston, MSc Genetic and Genomic Counselling students.
Research
Understanding the Utilization of PGT Among Individuals with Inherited Aortic or Vascular Disease.
Lead Researcher
Kaleigh Patton, Genetic Counsellor, Boston.
VEDS Clinical Trials
Clinical Trial
Zevra Therapeutics are conducting 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).
Sponsored by
Zevra Therapeutics.
Annabelle's Challenge & EDS Service Collaboration
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
- Having a rare disease presents a unique set of health care challenges.
- Self-advocacy can help people with a rare disease get their needs met.
- Empowering health care professionals in rare disease is important.
- Specialised services are uniquely placed to help people with rare diseases.
- Collaborations between patients and health care professionals support self-advocacy.
NEEDS Study
600
We support over 600 members affected by Vascular EDS.
