Background: -X-linked retinoschisis (XLRS) is an inherited eye condition. Researchers want to learn more about how people with XLRS choose to take part in research studies. They hope to find ways to help other people make decisions about joining early phase trials Objective: -To learn more about how people think and feel about taking part in early phase research. Eligibility: -Adults age 18 or older with diagnosed XLRS. They must be eligible to be screened for a Phase I/II ocular gene transfer clinical trial. Design: * Participants will be screened for the XLRS gene transfer study. They will be interviewed: * Eligible participants who join the study - before the gene transfer procedure, then 3 months and 12 months after it. * Eligible participants who do not join the study - after their screening visit and 3 months and 12 months later. \<TAB\>- Participants who are screened but ineligible - after their screening visit. \<TAB\>- Participants who choose not to be screened - at the time they make the decision and 1 year later. * Interviews will ask for the participants thoughts about the clinical trial and why they chose to take part or not. The interviews will be recorded. * On the day of interview 1, participants will fill out a survey about their mood and personality. * On the days of interviews 2 and 3, participants will fill out a survey about their mood. * Interviews may be done in person or by phone. Surveys can be done online or through the mail. Or they can be done in person at the NIH Clinical Center.
Age range
18 Years
Sex
MALE
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
Desc. expectation pt enroll ct
Timeframe: Study Completion