Patient registries are more than just databases or collections of data. Registries are powerful tools that can transform real-world clinical, social, and patient-reported data into actionable insights. Without high-quality and secure registries, we risk poorer patient outcomes, slower research progress, and a less equitable and effective health system.

As a member of the Future of Registries Taskforce (FoRT), Alpha-1 Foundation Ireland is pleased to announce the launch of a new report titled “Sustaining Patient Registries in Ireland”. The new report outlines a roadmap for establishing a sustainable, cost-efficient registry model to improve patient care and support health care research, policy and practice. Examples of several patient registries are included in Appendix 5, including our own Alpha-1 Registry.

To read the report click here.

For more information on the National Alpha-1 Registry, visit https://www.alpha1.ie/irish-alpha-1-registry/.