My Retina Tracker®
My Retina Tracker ® is a free on-line registry provided by the Foundation Fighting Blindness as part of its mission to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa, macular degeneration, Usher syndrome and the entire spectrum of inherited retinal degenerative diseases.
My Retina Tracker ® is designed with state-of-the-art database technology to protect your privacy. Data in the registry is only accessible to the participants, the Foundation registry staff and appropriately qualified researchers who have applied to the Foundation, through a rigorous scientific review process, for access to the data for research or to help accelerate clinical trial enrollments.
To create an account in My Registry Tracker ®:
- Click the Register Now button.
- You will be guided through an informed consent process to ensure you understand your rights.
You will then be invited to establish a username and password.
- Please note: for your security, the My Retina Tracker ® site is completely independent of the Foundation Fighting Blindness website and requires its own username and password.
- You will then be guided through a series of questions that will build your personalized retinal health profile.
Once an account is established you can access your data at any time. This will allow you to update your retinal health profile as you wish. By using the “Notes” function of My Retina Tracker ®, you will be able to record and review your own account of how your retinal health changes over time.
Include Your Clinical Exam Results
After you have registered as a participant, you have the option to invite your retinal healthcare provider (doctor or genetic counselor) to update your records, each time you have an appointment, with your most recent clinical eye examinations and genetic testing results. Each participant controls how much of their clinical information is shared and how it is used. If you would like to ask your clinician to add to your retinal health profile, fill out the Clinical Data Input Request form, take it to your appointment, ask your healthcare provider to enter you most recent exam results, and give them the form to file in their patient records.