Understanding activity participation among individuals with Wolfram Syndrome.

Introduction: Wolfram Syndrome (WFS) is a rare genetic disease associated with a variety of progressive metabolic and neurologic impairments. Previous research has focused on WFS-related impairments and biomarkers for disease progression; however, information about how WFS impacts participation in daily activities is lacking.

Methods: WFS (n=45; 20 children, 25 adults) participants completed an online questionnaire about activity participation.