Clinical research seeks to potentially advance and improve potential treatments for a variety of conditions, including inherited retinal diseases (IRDs).

A registry is a type of observational clinical research designed to record and store information about participants and their health data over time. A registry typically lasts longer than a research study—for example, the EYE-RD Global Registry is planned to be conducted for 8+ years. Like research studies, the goal of a registry is to potentially inform the development of future treatments.

The goal of this registry is to collect current health data that may support the evolving research needs of the IRD community. Participants’ health information from their regularly scheduled eye doctor appointments will be collected for research purposes for this registry. This data will provide insights that can be used to improve patient care management and to potentially inform the development of future treatments for the X-linked retinitis pigmentosa (XLRP) and achromatopsia (ACHM) communities.

To qualify to join this registry, participants must be at least 3 years of age and have a suspected or confirmed diagnosis of X-linked retinitis pigmentosa (XLRP) or achromatopsia (ACHM) (other inclusion and exclusion criteria may apply). No visits, assessments, or testing are required beyond routine eye exam procedures. Participant follow-up will be captured at their own eye doctors’ offices. Participants will also be invited to complete questionnaires. Both patients and caregivers who meet the eligibility criteria can join the registry.

The results of this study may help participants or future patients. This registry may potentially help to build a global view of IRDs and provide missing information about ultra-rare eye diseases like XLRP and ACHM.