The Nuts and Bolts of Patient Registries – Expert Presentations
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 storage, governance and funding
Dr Abaigeal Jackson – Research Lead, Cystic Fibrosis Registry of Ireland
Dr Conan Donnelly – Research Manager, National Cancer Registry Ireland
Godfrey Fletcher – Chief Executive Officer, Cystic Fibrosis Registry of Ireland
Professor Anthony O’Regan – Dean of Postgraduate Specialist Training, RCPI; Consultant in Respiratory and Internal Medicine, University Hospital Galway; Professor of Medicine, NUIG
10:15am Patient organisation presentations and expert feedback
- Harriet Doig – Information, Advocacy & Research Officer, MS Ireland
- Dr Laura Brady – Research Manager, Fighting Blindness
- Dr Sinead Hickey – Research Manager, DEBRA Ireland
11:00am Coffee break and networking
11:20am Audience and Expert Discussion
Expert and Patient Organisation Presentations
Attached Documents
Research Manager, National Cancer Registry Ireland
Research Lead, Cystic Fibrosis Registry Ireland
Chief Executive Officer, Cystic Fibrosis Registry of Ireland