Understanding activity participation among individuals with Wolfram Syndrome Emily Bumpus, OTD, Occupational Therapy Doctoral Student, Program in Occupational Therapy at Washington University School of Medicine, USA Tamara Hershey, PhD, Associate Professor, Departments of Neurology, Psychiatry, and Radiology at Washington University School of Medicine, USA Tasha Doty, MA, Professional Rater III, Program in Occupational Therapy and Department of Psychiatry at Washington University School of Medicine, USA Samantha Ranck, MSW, Professional Rater III, Department of Psychiatry at Washington University School of Medicine, USA Meredith Gronski, OTD, Director, Department of Occupational Therapy at Methodist University, USA Fumihko Urano, MD, PhD, and Professor, Department of Medicine, Division of Endocrinology, Metabolism and Lipid Research, and Department of Pathology and Immunology at Washington University School of Medicine, USA Erin R Foster, OTD Assistant Professor, Program in Occupational Therapy and Departments of Neurology and Psychiatry at Washington University School of Medicine, USA Abstract 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. Thirty-six non-WFS comparison participants (11 children; 25 adults) Corresponding Author: Erin Foster, OTD. Campus Box 8505, 4444 Forest Park Ave, St. Louis, MO, 63108, USA. erfoster@wustl.edu. Research ethics: Ethical approval was obtained from the Washington University in St. Louis Institutional Review Board on 05/25/17 (#201301004). All participants provided written informed consent. Declaration of conflicting interest: The Authors declare that there is no conflict of interest. HHS Public Access Author manuscript Br J Occup Ther. Author manuscript; available in PMC 2018 June 01. Published in final edited form as: Br J Occup Ther. 2018 June ; 81(6): 348–357. doi:10.1177/0308022618757182. Author Manuscript Author Manuscript Author Manuscript Author Manuscript