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. 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.