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Vascular Ehlers-Danlos Syndrome (vEDS) Research Collaborative Study

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.

Participant Eligibility

-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.
https://redcap.iths.org/surveys/?s=LTWWDAC3XJ

Contact

Amy Gest
(206) 353-3076

Additional Study Details

Full Study Title
Vascular Ehlers-Danlos Syndrome (vEDS) Research Collaborative Study

Study ID: STUDY00007220
Start Date: 05/03/2019
End Date: 05/02/2039

Investigator(s)
Sherene Shalhub, MD, MPH, Associate Professor

Accepts Healthy Volunteers?
No

Study Site(s)

University of Washington

1959 NE Pacific St 110
Seattle, Washington 98195



Interested?

Use the link below to send a message to the study coordinator, or call the number above to speak directly with a study representative.

I am interested in this research study.

SITE PARTNERS
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