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
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 cases, registries remain a thing of the future. The challenges to developing registries […]
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 […]