Understanding EDS
a hEDS post-diagnosis research study
for US participants
Patient Perceptions on Healthcare Specialists Knowledge of Hypermobile Ehlers-
Danlos Syndrome Post Diagnosis
in partnership with Researcher Shelby Paulson
The purpose of this survey is to investigate patient perceptions of healthcare specialists’ knowledge of hEDS after receiving a clinical diagnosis of 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. This may help decrease the length of the diagnostic odyssey and increase the quality of informed care that patients receive after their diagnosis.
In this survey, knowledge should be ranked based on how much information you feel that the specialist knew about hEDS after you had a diagnosis of hEDS.
