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.


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;


  • 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 McKoneChairpersonConsultant in Respiratory Medicine, St. Vincent’s University Hospital, Dublin
Prof Cedric Gunaratnam Vice ChairpersonConsultant in Respiratory Medicine, Beaumont Hospital, Dublin
Dr Marion RowlandSecretaryLecturer, UCD School of Medicine & Medical Sciences
Mr John ColemanTreasurerPatient Representative
Prof Peter GreallyConsultant in Paediatric Respiratory Medicine, Tallaght University Hospital
Prof Gerry McElvaneyProfessor of Medicine, Royal College of Surgeons in Ireland &  Consultant in Respiratory Medicine Beaumont Hospital, Dublin
Prof Paul McNallyConsultant in Paediatric Respiratory Medicine, Children’s Hospital Ireland at Crumlin
Dr Barry LinnaneConsultant in Paediatric Respiratory Medicine, University Hospital Limerick
Prof Barry PlantConsultant in Respiratory Medicine, Cork University Hospital
Mr Philip WattChief Executive, CF Ireland

We are using cookies on our website

Please confirm, if you accept our tracking cookies. You can also decline the tracking, so you can continue to visit our website without any data sent to third party services.