All Ireland Cystic Fibrosis Research Consortium

About the Consortium

Objectives

Goals

· Coordinate the Cystic Fibrosis registries of Northern Ireland and the Republic of Ireland so that more can be learned about disease incidence on the entire island.

· Enhance the understanding of underlying disease mechanisms, through best in class basic scientific and clinical research, in order to develop “bench to bedside” solutions.

· Establish a Therapeutic Development Network, which will enable the CFRC to conduct joint clinical research studies involving people from all three jurisdications.

· Develop and sponsor formal training programmes for Irish and American medical, nursing, and scientific scholars. Establish a Fellowship Exchange programme between Northern Ireland, Republic of Ireland and the United States of America.

· Establish a neonatal screening programme and develop a coherent best practice follow-up healthcare programme that becomes standard of care for cases identified.

Initial Activities

1. The Establishment of common Neonatal Screening Programme in both Northern Ireland and Republic of Ireland linked to national registries

2. The enhancement and co-ordination of CF registries in Northern Ireland and Republic of Ireland

3. Developing a comprehensive plan for the provision of best practice standard of follow-up care for identified cases

4. The Creation of a Therapeutic Development Network to support clinical trials of CF therapies in Ireland

5. Supporting fundamental research leading to improved detection and therapy, patient stratification and more sophisticated and convenient monitoring regimes

6. The enhancement of informatics and other infrastructure improvements to support the conduct and co-ordination of clinical trials throughout the island of Ireland

7. Development of education/training and scholar exchange programmes

Investigators

Associate Members