The Nuts and Bolts of Patient Registries – Expert Presentations

Workshop chart
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 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

PDF icon Dr Sinead Hickey, DEBRA Ireland (370 kB)

 

PDF icon Dr Laura Brady, Fighting Blindness (194 kB)

 

PDF icon Professor Anthony O’Regan (1.65 MB)
Consultant Physician, Galway University Hospital
Irish Thoracic Society Interstitial Lung Clinical Advisory Group 
 
PDF icon Dr Conan Donnelly (942 kB)

 Research Manager, National Cancer Registry Ireland

PDF icon Dr Abaigeal Jackson (842 kB)

Research Lead, Cystic Fibrosis Registry Ireland

PDF icon Harriet Doig, MS Ireland (219 kB)

 

PDF icon Godfrey Fletcher (306 kB)

Chief Executive Officer, Cystic Fibrosis Registry of Ireland