A half day event was hosted by the Cystic Fibrosis Registry of Ireland and Health Research Charities Ireland. It brought together stakeholders in the patient/disease registry space to share learning about operating a registry in the Irish context and the sustainability of registries as a whole. We heard inspiring presentations highlighting the value of registries, marking the impressive 20 year milestone of CF data collection. It was a great reminder of the importance of patient registries in monitoring and improving patient outcomes, and the need to think outside the box to ensure that they remain sustainable and valuable into the future.
Lara Cutlar presented an overview of NISR Solutions CLG regsitries and gave a description of the pathway to setting up a new patient regsitry in Ireland.