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Frequently Asked Questions

Genetic testing helps researchers find markers or variants in your DNA. During screening for this study, study staff will collect DNA from you through a saliva sample to test for the RPGR gene variant. Eligible participants must have the RPGR variation associated with XLRP to take part in this study. If genetic testing has been completed previously, those results may be used if done by a certified laboratory.

Gene therapy delivers a copy of a healthy gene to try to help certain conditions. The investigational gene therapy in the LUMEOS study involves surgery to deliver a healthy RPGR gene in participants with XLRP-RPGR.

The surgery in this study is an outpatient surgery, takes about 1 hour, and is a standard technique for many different conditions. You will have surgery on your worst-seeing eye first, then on your other eye 7 to 21 days later. Study staff will provide instructions before and after surgery. You will not be able to travel home by yourself the day of surgery.

Participants will receive all study-related procedures, assessments, and the investigational gene therapy at no cost. Travel assistance will be available. However, you will not be paid to participate in the study.

There are possible risks involved with any clinical research study. Your study doctor will review the risks with potential participants, and all participants will be closely monitored throughout the study.

Genetic testing helps researchers find markers or variants in your DNA. During screening for this study, study staff will collect DNA from you through a saliva sample to test for the RPGR gene variant. Participants must have the RPGR variation associated with XLRP to be eligible for this study. Previously obtained positive results from an accredited lab are acceptable.

Gene therapy delivers a copy of a healthy gene to try to help certain conditions. The investigational gene therapy in the LUMEOS study involves surgery to deliver a healthy RPGR gene in participants with XLRP-RPGR.

The surgery in this study is an outpatient surgery, takes about 1 hour, and is a standard technique for many different conditions. You will have surgery on your worst-seeing eye first, then on your other eye 7 to 21 days later. Study staff will provide instructions before and after surgery. You will not be able to travel home by yourself the day of surgery.

Participants will receive all study-related procedures, assessments, and the investigational gene therapy at no cost. Travel assistance will be available. However, you will not be paid to participate in the study.

There are possible risks involved with any clinical research study. Your study doctor will review the risks with you, and all participants will be closely monitored throughout the study.

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