Identifying Appropriate Clinical Outcome Measures for People with Ehlers-Danlos Syndrome

Project description: There are currently no standardized outcome measures (OM) to evaluate health and treatment effectiveness in EDS/HSD patients. Areas of interest for OM include general function, pain, upper extremity function, balance, mobility, mast cell activation symptoms, dysautonomia, cognition and mood. This study will provide evidence-based recommendations for OM use in clinical practice, education, and research specific to individuals with EDS/HSD. The recommended OM will be published in a leading journal, and presented at appropriate conferences. Expected duration: 3 months.

Patient impact: Creating a set of standardized outcome measures is instrumental to evaluating the health of patients with EDS/HSD and the effects of interventions. Until we have a single, accepted set of standards, it is impossible to compare treatments, and difficult to prove effectiveness. In addition to raising awareness about EDS/HSD generally, the publication and broader discussion of the recommended outcome measures will create those standards, and provide the background for subsequent EDSRF research on treatments.