FIGURE 1.

Structure of the My Retina Tracker Registry. People affected with an inherited retinal disease (IRD) join the Registry through a Member Portal https://www.fightingblindness.org/my‐retina‐tracker‐registry Following an online informed consent, members are presented with surveys to capture their objective experience of living with an IRD. During a visit to a clinician, the member can request the clinician enter the clinical ophthalmic exam results through a Clinician Portal on the same web site. To simplify use, clinical data entry is one way, requires no prior authorization, username or password, and initially enters a holding database. Clinical data is released from the holding database into the members profile once an algorithm run by the Registry Coordinator identifies a matching profile in the Registry database. Genetic testing data generated by the CLIA‐certified genetic testing partner lab can be downloaded electronically from the lab directly into the registry and matched to the correct member profile. Both the pdf genetic report and the complete set of sequence variants detected are transferred into the database along with their classification. Researchers, approved for access, can view and download de‐identified data either through a dedicated researcher portal or in collaboration with the Registry staff who may perform searches on their behalf