The Impact of Underinvestment in Ehlers-Danlos Syndrome

Currently Underway
Written By Amber Amburgey

PRINCIPAL INVESTIGATORS: Alissa Zingman MD (P.R.I.S.M. Spine and Joint, Bethesda, MD) and Clair A. Francomano MD (Indiana University School of Medicine)

PROJECT GOAL: Assess the baseline state of provider knowledge, patient access to appropriate care, and the costs of inadequacies to both patients and society. The study will use a survey questionnaire distributed to patients seen at P.R.I.S.M. Spine and Joint (Silver Spring, MD) and other sites in 2024. 

STUDY TYPE: Survey questionnaire

STATUS: In progress

Amber Amburgey
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Economic Impact of Ehlers-Danlos Syndrome: Patient Perspective
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Prevalence of Ehlers-Danlos Syndromes in the United States