Prevalence of Ehlers-Danlos Syndromes in the United States

Currently Underway
Written By Amber Amburgey

PRINCIPAL INVESTIGATORS:  Jane R. Schubart PhD (Penn State College of Medicine) and Avnish Katoch (Research Informatics, Clinical & Translational Science Institute, Penn State College of Medicine)

PROJECT GOAL:  To estimate the prevalence of Ehlers-Danlos syndromes and related comorbidities in the United States.

STUDY TYPE: Retrospective analysis of a large health systems database

STATUS: In progress

SUMMARY: This project will use a global federated health research network, called TriNetX, that provides access to electronic medical records (diagnoses, procedures, medications, laboratory values, genomic information) across large healthcare organizations (HCOs).  

Amber Amburgey
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Title: Patient-Reported Outcomes Following Sectioning of the Filum Terminale for Treatment of Tethered Cord Syndrome Associated with Ehlers-Danlos Syndrome