General Information

The Registry is located in offices at Woodview House, University College Dublin, Belfield, Dublin 4, Ireland.

The Cystic Fibrosis Registry of Ireland has been established to keep relevant medical records of each patient with cystic fibrosis in a central computer system. It has been funded by the Department of Health and Children and the HSE from the beginning.

Information will be tabulated on a regional basis in order to support planning for local services for the betterment of cystic fibrosis patients countrywide.

A Director was appointed by the Cystic Fibrosis Association of Ireland in June, 2001, to oversee the setting up and implementation of the Registry. It is the responsibility of the Director (now, Chief Executive) to include all possible sources of information for entry into the database. These sources of information include doctors, nurses, physiotherapists, dieticians and patients themselves.

The Registry is accessible to permitted users only through the internet. The information that is stored in the database will be taken from hospital medical charts.

Every participating hospital that contributes patient data to the Registry must approve of the CFRI through their research ethics process. The records of patients will be entered onto the computer system (database) by the Clinical Research Associates.

Participation in the Registry will be treated as confidential and disclosure of any personal records or results relating to the CFRI will be limited to the patient's consultant doctor.