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Vascular Ehlers-Danlos Syndrome Collaborative
Health careMedical recordPatient experienceFamily medicineConfidentiality
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#1Sherene Shalhub (UW: University of Washington)H-Index: 13
#2Liz Sage (UW: University of Washington)H-Index: 1
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Abstract Objective Patient centered research requires active engagement of patients. The Vascular Ehlers-Danlos Syndrome (vEDS) research collaborative was established to ascertain patient-centered vEDS research priorities and to engage affected individuals as research partners. Evaluation of access to information and interest in research among individuals with vEDS was the first step undertaken as part of this work. Methods A 28 question survey was created to evaluate four domains of interest: D...
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