04 Jun Vascular Ehlers-Danlos Syndrome (vEDS) Research Collaborative Study
This is a natural history study to define the contribution of known vEDS gene mutations to vEDS complications and outcomes. This will be achieved by the following:
1. Describe the genotype-phenotype correlation between vEDS gene mutations and complications. These complications include aortic and arterial pathology (e.g. fistulas, aneurysms and dissections, vein and artery clots), gastrointestinal complications (e.g. bowel perforation, bowel obstruction), pulmonary complications (e.g. pneumothorax), uterine rupture, and other complications related to vEDS.
2. To evaluate long -term outcomes of medical and surgical management of the vEDs complications and correlate the outcomes to the underlying genetic mutations.
3. To understand the additional modifiers that can lead to complications such as environmental factors (e.g. diet and exercise), medical management factors, and surgical interventions factors.
This work will lead to
– Creating treatment guidelines based on the underlying gene mutation
– Discovering and/or create novel medical practices, diagnostic tools, protective therapies and medicines for the future that will prevent and/or cure the complications of vEDS.
-You must have molecular confirmation of the vEDS diagnosis (genetic testing results or skin biopsy results)
-You must be 18 and over
Note: We anticipate a large response. A study research coordinator will get back to you within two weeks.
If you are interested, please confirm eligibility for the Vascular Ehlers-Danlos Syndrome (vEDS) Research Collaborative Study through the link below.
Additional Study Details
Full Study Title
Vascular Ehlers-Danlos Syndrome (vEDS) Research Collaborative Study
Sherene Shalhub, MD, MPH, Associate Professor
Accepts Healthy Volunteers?
University of Washington
1959 NE Pacific St 110
Seattle, Washington 98195