Charitable Purpose
To provide for the relief of sickness, disease and human suffering and to advance education by facilitating and undertaking research and providing accurate reports in order to monitor and improve treatments which will contribute to the improving quality of care and outcomes of persons with cystic fibrosis.
Objectives:
Registry Process
- to identify, record, analyse, and store information relating to the prevalence, incidence, and treatment of existing and newly diagnosed people with cystic fibrosis (“CF”) in the State;
- to register all persons with cystic fibrosis (“PWCF”) whose usual residence is in the State;
- to provide data on long term prognosis for CF patients in the State and to compare this information with international data;
- to compare CF management and treatment within the State and with best international practice standards;
- to ensure that all information is complete, accurate, timely and confidential; in order to effectively use the data collected;
- to develop and improve methodologies and technologies of registries and more specifically the Cystic Fibrosis Registry in Ireland;
Research
- to develop and improve methodologies and technologies of registries and more specifically the Cystic Fibrosis Registry in Ireland;
- to initiate research into the causes, distribution, treatment and outcome of PWCF, and to participate in similar research initiated by others; and to publish the findings;
- to assist in the evaluation of novel treatments and screening programmes;
Planning & Management
- to assist in the planning and management of health services and essential resources for PWCF;
Ensuring effective & responsible registry operation
The CFRI is a not-for-profit Company Limited by Guarantee with a Constitution of its own and a registered Irish charity (CRA 20202613). A Board of Directors, made up of healthcare professionals involved in CF care and patient representatives oversee the management of the registry.
A Scientific Research Committee, made up from CF medical care teams, is responsible for the release and use of any data from the registry. Names, addresses and other information that could be used to identify participants are kept strictly confidential and are not available to those analysing the data.
Board of Directors
Prof Ed McKone | Chairperson | Consultant in Respiratory Medicine, St. Vincent’s University Hospital, Dublin |
Prof Cedric Gunaratnam | Vice Chairperson | Consultant in Respiratory Medicine, Beaumont Hospital, Dublin |
Dr Marion Rowland | Secretary | Lecturer, UCD School of Medicine & Medical Sciences |
Mr John Coleman | Treasurer | Patient Representative |
Prof Peter Greally | Consultant in Paediatric Respiratory Medicine, Tallaght University Hospital | |
Prof Gerry McElvaney | Professor of Medicine, Royal College of Surgeons in Ireland & Consultant in Respiratory Medicine Beaumont Hospital, Dublin | |
Prof Paul McNally | Consultant in Paediatric Respiratory Medicine, Children’s Hospital Ireland at Crumlin | |
Prof Barry Linnane | Consultant in Paediatric Respiratory Medicine, University Hospital Limerick | |
Prof Barry Plant | Consultant in Respiratory Medicine, Cork University Hospital | |
Dr Sarah Tecklenborg | Interim CEO, CF Ireland |