Unlocking the Potential of Patient Registries: A Guide for Success

Patient registries play a crucial role in enhancing healthcare and health outcomes, serving as vital foundations for developing and maintaining research networks and projects. A steadily increasing appreciation of their importance in the broader health data landscape, along with advancements in technological solutions, is leading more groups to embark on developing a registry. While there are many challenges, with careful planning and the involvement of all relevant stakeholders, as well as guidance from those with prior experience, it is entirely feasible to develop and sustain an effective patient registry.

In 2023 CFRI and HRCI jointly hosted a very productive event entitled ‘The Future of Patient Registries in Ireland’. Rather than producing a simple event report, we decided to create a more useful output. Through drawing on the discussions held during the event, building on a previous version published in 2018 by HRCI, and enlisting the additional expertise of National and International Skin Registries, we have created this guidance document.

Our hope is that this guidance proves useful to everyone with an interest in patient registries, both in Ireland and beyond, and that it leads to the establishment of more high-quality registries, ultimately improving the lives of people living with health challenges.