Innovating EDS Diagnosis and Care through a Research-Driven Approach

Our patient care model has been developed alongside rigorous research studies conducted to validate our treatment approach and continue to improve quality of care.

OUR RESEARCH PUBLICATIONS

Our Research

Current Projects

Evaluation of shortness of breath in patients with EDS and G-HSD

Title: Evaluation and Management of Dyspnea in Hypermobile Ehlers-Danlos Syndrome and Generalized Hypermobility Spectrum Disorder: Protocol for a Pilot and Feasibility Randomized Controlled Trial

Aim: This study aims to evaluate dyspnea, respiratory muscle strength, and patient-reported outcome measures (PROMs) in hEDS or G-HSD compared with healthy controls and to assess the feasibility of a randomized controlled trial of IMT and standard-of-care rehabilitation for improving respiratory muscle strength, exercise capacity, and PROMs compared with standard-of-care rehabilitation in hEDS and G-HSD.

Using technology to aid in hypermobility assessments

Title: Feasibility of video-based joint hypermobility assessment in individuals with suspected Ehlers-Danlos syndromes/generalized hypermobility spectrum disorders: a single-site observational study protocol

Aim: The aim of this study is to develop a video-based assessment tool to improve the accuracy for assessing joint hypermobility using the Beighton score.

Our Research Funding Sources