This goal of this study is to understand the symptom expression and variability of symptoms of individuals with EDS. We are using qualitative interviews and surveys to try to generate groups of phenotypic expression of EDS based on the reported symptoms of participants living with EDS.
Project Coordinator: Sarah Mathena
Omics
This study is looking to collect tissue, blood, and urine samples for studying the differences in RNA, protein, hormone, and metabolite levels in people with hEDS.
Project Coordinator: Corina Mauss
Assessing Autonomic Dysfunction in Individuals with Childhood Onset Chronic Conditions using a Wearable Device
This study is examining the variability in autonomic dysfunction of individuals with chronic conditions and address how the long term stress of chronic conditions impacts the overall functionality of the body. This is to determine what types of variability in symptoms individuals with chronic conditions may have especially prior to a diagnosis of autonomic dysfunction, but also to attempt to help improve quality of life by determining if there are patterns in their overall functionality of their body over time.
Project Coordinator: Sarah Mathena
Physical Therapist and General Practitioner Diagnostic Partner Program
The main objective of this project is to bring together a work group of general practitioners and physical therapists to develop a training and certification to complete an evaluation for Hypermobile Elhers Danlos Syndrome (hEDS) and a companion training for general practitioners to use that evaluation in assigning a medical diagnosis and working with the patient to manage their care.
Project Coordinator: Corina Mauss
hEDS Patient Symptom Management Guide
The goal of this project is to help create a resource for participants with EDS based upon self reported management techniques to help improve quality of life for individuals with this condition.
Project Coordinator: Sarah Mathena
Registry and Biorepository for the Hypermobile Ehlers Danlos Syndrome Population
This is a patient base repository to study a genetic approach to the solution of hEDS.
Project Coordinator: Corina Mauss
Assessing Medical Gaslighting and Barriers to diagnosis of Ehlers-Danlos Syndrome Amongst Women
This study is examining the pathways and barriers to diagnosis of individuals with EDS and how they may have experienced medical gaslighting as they navigate through the medical system and the consequences of that experience in their willingness to seek care.
