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Longitudinal Prospective Natural History Study of Retinopathy in Zellweger Spectrum Disorder
Sponsor: McGill University Health Centre/Research Institute of the McGill University Health Centre
Summary
The goal of this observational study is to define the course of the retinal degeneration in a ZSD patient cohort. The objective of this study is to gather information so the investigators can: 1. define the course of the retinal degeneration in a ZSD patient cohort with retinal degeneration 2. define what tests best monitor the progression of the retinal degeneration 3. generate prognostic information about vision loss in ZSD. At each yearly visit, the participants will answer a functional vision questionnaire, have a physical evaluation, blood test, and participate in a variety of vision tests. The investigators will also collect pertinent medical history. Participants will travel to study site. The study will provide financial support for board and travel.
Key Details
Gender
All
Age Range
Any - Any
Study Type
OBSERVATIONAL
Enrollment
30
Start Date
2023-12-18
Completion Date
2029-01-01
Last Updated
2026-01-21
Healthy Volunteers
No
Conditions
Locations (3)
University of Rochester Medical Center/Flaum Eye Institute
Rochester, New York, United States
Eye Institute of Alberta
Edmonton, Alberta, Canada
Research Institute-McGill University Health Center
Montreal, Quebec, Canada