Unlocking the potential of patient registries: a guide for success

Health Research Charities Ireland; NISR; Cystic Fibrosis Registry of Ireland

dc.contributor.author	Health Research Charities Ireland
dc.contributor.author	NISR
dc.contributor.author	Cystic Fibrosis Registry of Ireland
dc.date.accessioned	2024-09-11T11:30:34Z
dc.date.available	2024-09-11T11:30:34Z
dc.date.issued	2023
dc.identifier.citation	Unlocking the Potential of Patient Registries: A Guide for Success, 2023, HRCI/ NISR /CFRI, https://hrci.ie/unlocking-the-potential-of-patient-registries-a-guide-for-success/	en_US
dc.identifier.uri	http://hdl.handle.net/10147/642858
dc.description	The Cystic Fibrosis Registry of Ireland (CFRI) and Health Research Charities Ireland (HRCI) co-hosted an event, entitled The Future of Patient Registries in Ireland in February 2023. The aim of the event was to celebrate 20 years of collecting data by the CFRI and to share lessons learnt by existing registries at different phases of their evolution. Alongside this, the event aimed to consider the policy and standards context in which registries operate, and to facilitate discussion about patient registries in Ireland. Over 100 people attended the event, and the discussions have influenced this update of our earlier 2018 publication on this theme. This publication expands the previous version by extending guidance beyond setting up a registry to operating and sustaining a registry and also seeks to reflect the changing data protection and technological environment. That said, this guide is not intended to be exhaustive or systematic, but rather a series of guiding principles and key points to help readers think through the process of developing, operating and sustaining a registry. It has been written with patient organisations and all with an interest in health data in mind. The guide is structured into 3 main sections: developing a registry, operating a registry, and sustaining a registry, each with a number of sub-sections. The sections are not intended to reflect a stepwise process to be completed sequentially, rather a set of important areas readers should consider concurrently.	en_US
dc.language.iso	en	en_US
dc.publisher	HRCI/NISR/CFRI	en_US
dc.rights	Attribution-NonCommercial-NoDerivatives 4.0 International	*
dc.rights.uri	http://creativecommons.org/licenses/by-nc-nd/4.0/	*
dc.subject	Patient registries	en_US
dc.subject	HEALTH RESEARCH	en_US
dc.title	Unlocking the potential of patient registries: a guide for success	en_US
dc.type	Report	en_US
dc.contributor.department	Health Research Charities Ireland, NISR, Cystic Fibrosis Registry of Ireland	en_US
refterms.dateFOA	2024-09-11T11:30:36Z