An Ethnographic Study of Ehlers-Danlos Syndrome Care and Management Discussions and Shared Decision Making

Overview

About this study

The purpose of this study is to ensure evidence-based integration of meaningful SDM processes as a core value within EDS clinics. By doing so, we will further establish our national and international reputation as a leading patient-centered care model for EDS while fulfilling Mayo Clinic’s RICH TIES Values.

Participation eligibility

Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Guidelines differ from study to study, and identify who can or cannot participate. There is no guarantee that every individual who qualifies and wants to participate in a trial will be enrolled. Contact the study team to discuss study eligibility and potential participation.

Inclusion Criteria: 

  • Participants diagnosed with Ehler’s Danlos Syndrome or Hypermobility Spectrum Disorder.
  • Must be 18 years of age or older.

Exclusion Criteria:

  • There are no exclusion criteria regarding gender or race.

Note: Other protocol defined Inclusion/Exclusion Criteria may apply.

Eligibility last updated 7/7/23. Questions regarding updates should be directed to the study team contact.

Participating Mayo Clinic locations

Study statuses change often. Please contact the study team for the most up-to-date information regarding possible participation.

Mayo Clinic Location Status Contact

Jacksonville, Fla.

Mayo Clinic principal investigator

Shilpa Gajarawala, DMSc, MPAS, P.A.-C.

Closed for enrollment

Contact information:

Clinical Studies Unit

(904) 953-2255

More information

Publications

Publications are currently not available