A Landmark Report on Data Collection for Usher Syndrome

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Following independent research by Connect Research on behalf of Usher Syndrome Ireland, we are pleased to share the final report exploring the feasibility of establishing a patient registry in Ireland. This scoping study highlights the urgent need for better data to understand the prevalence of USH in Ireland, identifies current gaps and challenges, and outlines potential solutions to ensure a patient registry is sustainable, holistic, and truly centred on the needs of the USH community.

This is the second major research project undertaken by Usher Syndrome Ireland. It marks an important step towards building a system that not only supports access to future treatments and clinical trials, but also helps shape services in healthcare, education, mental health, employment, and accessibility.

Key findings from the report include:

• Significant gaps in knowledge: the true number of people with USH in Ireland is still unknown, with many undiagnosed.
• Fragmented data systems: existing collections are siloed (hearing and vision often separate) and not comprehensive.
• Community support: survey results show strong willingness from the USH community to contribute to a registry.

By sharing this report openly, we are not only demonstrating our commitment to the Irish USH community, but to contributing to global efforts for the benefit of the global USH community. As the report highlights, collaboration between patients, clinicians, researchers, European and international partners will be key to developing a strong foundation for a successful USH registry.

If you require the report in another format, please contact us.

This project was made possible thanks to a grant from the Hospital Saturday Fund, whose support we gratefully acknowledge.