Health Information
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 […]
Report: Do patients and the public trust researchers with their health data?
Do patients and the public trust researchers with their health data? In 2019 we held a small workshop with patients and members of the public to capture their views on how they wish their data to be treated, for the purposes of health research. Download our pdf to see the results of our findings. Do […]
The Nuts and Bolts of Patient Registries – Expert Presentations
On April 9th, the MRCG held a workshop titled ‘The Nuts and Bolts of Patient Registries’ in the Carmelite Centre, Dublin 2. Workshop Agenda 9:00am Registration 9:20am Welcome and Opening Remarks Dr Avril Kennan, CEO, Medical Research Charities Group 9:30am Expert Presentations These brief presentations will cover practical aspects of registries including, developing a dataset, managing data collection and […]
Developing a Patient Registry: A Practical Guide 2018
Click here to read the Guide Developing a Patient Registry: A Practical Guide September 2018 Patient registries are broadly recognised as a critical underpinning for improving healthcare through research. As an umbrella organisation for many medical research charities intimately involved in this pursuit, registries are a reoccurring theme. Despite their importance however, in too many […]
Why is developing a patient registry such a daunting task?
April 2018 I had lunch with a dear friend recently. It was one of those meals where everything is tiny, beautiful and surprises at every mouthful. My friend is the purest scientist I know and also a foodie, which I don’t believe is a coincidence. She thinks about the detail of things and about the […]
