11/13/2025
A pharmaceutical company has partnered with the Foundation Fighting Blindness to help identify people to take part in an important research study. This study has been approved by an Institutional Review Board (IRB), a committee responsible for ensuring the ethical and safe conduct of research involving human participants.
We’re looking to connect with adults who have been diagnosed with a macular dystrophy, sometimes called Stargardt-like, or Stargardt-type macular dystrophy. These conditions are most commonly linked to changes in specific genes, such as PRPH2, ELOVL4, PROM1, CDHR1, CTNNA1 or MT-TL1.
If you’ve been told your macular dystrophy is related to one of these genes, we’d love to hear about your experience living with the condition. Your voice can help shape future research.
Interview Details:
• Duration: 60 minutes
• Format: Phone or web-based teleconference (e.g., Zoom)
• Scheduled at your convenience
• The interview will be audio recorded
• Compensation will be provided
• Interviews will be conducted by Acaster Lloyd, an outcomes research consultancy that works with pharmaceutical companies to understand the impacts of various health conditions on people’s lives.
Why Participate?
Your insights may lead to a better understanding of macular dystrophies and help design future clinical trials of new treatments.
You may be eligible if you:
• Can provide confirmation of diagnosis through your patient portal, a medical invoice, a letter from your doctor, or a copy of a genetic test result confirming a mutation (e.g., PRPH2, ELOVL4, PROM1, MT-TL1, CDHR1 and CTNNA1)
• Have moderate visual impairment (BCVA: 20/40 to 20/80) or severe visual impairment (BCVA: ≥20/500 to