The RARE-X Vision Consortium is working to establish systematic and cross-disorder data collection and data aggregation with the following mission and purpose:

Mission: To promote collaboration across rare genetic ocular disorders that advances research leading to vision-enhancing therapies

Purpose: Address the following challenges in a pre-competitive, collaborative environment

Patient Identification & Recruitment

• Rare disease clinical trials struggle to identify and enroll patients who meet inclusion criteria AND choose to participate, and some never enroll enough patients to prove efficacy.
• Through collaboration, participation and community-led data collection, the Vision Consortium will serve as a centralized patient data repository for individuals affected by rare ocular diseases globally.

Inadequate Outcome Measures for Clinical Trials

• Existing outcome measures are inadequate for measuring meaningful changes in vision for rare disorders of vision loss- especially when loss of vision varies by condition and success to the patient community has not been defined.
• By aggregating clinical, image, and patient reported outcome data, the Vision Consortium aims to identify endpoints that correlate with meaningful change in patient’s lives.

All data collected through Vision Consortium programs will be available on a de-identified but patient level basis to qualified researchers (both in academia and industry) on an open science platform.