Understanding EDS
a hEDS pre-diagnosis research study
for US participants
Healthcare Provider Contribution to Diagnostic Delay in Patients with Hypermobile Ehlers Danlos Syndrome
in partnership with Researcher Brittany Galante
The purpose of this survey is to investigate the patient perceptions of healthcare specialists’ knowledge of hEDS before they were clinically diagnosed with hEDS.
The study’s findings may lead to a better understanding of which specialists are perceived by patients as having the most and the least knowledge of hEDS. This information could help to identify which specialists commonly seen by individuals with hEDS could benefit from additional education about hEDS, which may help decrease the length of the diagnostic odyssey.
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In this survey, knowledge should be ranked based on how much information you feel that the specialist knew about hEDS before you had a diagnosis of hEDS.
