Purpose of this Study
We are doing this study to learn more about mutations in the DNA of a gene called PCDH15. This mutation causes cells in the back of the eye to stop working (called "retinitis pigmentosa").
Who Can Participate?
Eligibility
Adults and children ages 8+ who:
- Are diagnosed with retinitis pigmentosa
- Have not had certain eye surgeries
For more information about who can be in this study, please contact the study team at DEC-RA@duke.edu.
- Are diagnosed with retinitis pigmentosa
- Have not had certain eye surgeries
For more information about who can be in this study, please contact the study team at DEC-RA@duke.edu.
Age Range
18-110
Sex/Genders
Male (cisgender)
Female (cisgender)
Non-binary or gender fluid
Transgender male
Transgender female
Looking for Healthy Participants
No
What is Involved?
If you choose to join the study, you or your child will:
- Be enrolled in the study for about 4 and a half years
- Visit our clinic 6 times over these 4.5 years
At various visits, you or your child will complete some questionnaires and have eye and vision tests. This is a data collection study that has no experimental study procedures.
- Be enrolled in the study for about 4 and a half years
- Visit our clinic 6 times over these 4.5 years
At various visits, you or your child will complete some questionnaires and have eye and vision tests. This is a data collection study that has no experimental study procedures.
Locations
Duke University Hospital
Visit Timing
Weekdays
Compensation
Yes
Spanish Materials Available
No
Study Details
Full Title
Rate of Progression of PCDH15-Related Retinal Degeneration in Usher Syndrome 1F (RUSH1F)
Principal Investigator
Ramiro
Maldonado
Protocol Number
PRO00111084
NCT ID
NCT04765345
Phase
N/A
Enrollment Status
OPEN TO ACCRUAL