X-linked Retinoschisis (XLRS)

Clinical evaluation of patients with X-linked Retinoschisis (XLRS)

The purpose of this study is to learn more about how to follow changes in vision and other symptoms associated with XLRS. This information is needed for the development of future gene therapy trials.

To be in this study, the participant must:

  • Have a clinical diagnosis consistent with XLRS
  • Have a documented disease causing RS1 mutation
  • Be 7 years of age or older
  • Be able to provide consent/assent
  • Be male

This study will last 3 years and will, at a minimum, consist of yearly visits at the Casey Eye Institute in Portland, Oregon. If study participants are not already using carbonic anhydrase inhibitors, they will be offered this standard of care treatment during the study. If participants start this treatment during the study, they will need to come for some additional visits.

UPDATE: Most costs related to this study will be covered by the sponsor. Participants or their insurance company will be responsible for the cost of carbonic anhydrase inhibitors, if needed.

For more information, please call the study coordinator at 503 494-0020.

Principal Investigator:

David Wilson, MD
Casey Eye Institute
3375 SW Terwilliger Blvd.
Portland, OR97239
eIRB# 8101