Ongoing Study - Not Currently Enrolling
Foundation Fighting Blindness RUSH2A Study (Usher Syndrome Type 2)
Purpose of study:
This observational research study is being done to gain more information on the progression of Usher Syndrome-related retinal degeneration over time. There is no treatment or medication given. Instead, this study aims to improve our understanding of Usher Syndrome Type 2 and help scientists develop future experimental treatment trials. Volunteers in this observational study may be eligible to participate in future treatment trials for Usher Syndrome Type 2.
What is Usher Syndrome Type 2?
Usher Syndrome Type 2 is a condition that affects both vision and hearing. Patients with Usher Syndrome Type 2 have hearing loss from birth and vision loss that begins in adolescence or adulthood and gradually worsens. The retina (which is made of light-sensing cells) degenerates over time due to an eye condition called retinitis pigmentosa, which causes impaired night vision and eventual loss of peripheral (non-central) vision. This condition can be caused by changes (mutations) in certain genes in your DNA, which is the genetic material you receive from your parents.
What is involved?
The study will last 4 years with about 5 study visits at the Eye Institute. The first study visit will take 2 days. Later visits occur once a year and typically take a whole day.
Study visits consist of a variety of imaging tests, questionnaires, and an eye exam. Some of the imaging will require your pupil to be dilated.
Research volunteers may receive compensation for time and travel for each study visit that is completed: $75 for each of the two longer visits and $50 for each of the three shorter visits.
You may be eligible to participate in this study if you meet these criteria:
- You have been told by a doctor that you have Usher Syndrome Type 2.
- You have had your blood genetically tested for mutations in your DNA related to this condition.
- You are 8 years or older.
Jaeb IRB application 2017-24429, 7/26/2017