The Irish CF Registry

The Cystic Fibrosis Registry of Ireland project was established in 2001 to keep the relevant medical records of each patient with cystic fibrosis in a central database. The patient records are entered onto the computer system (database) by Clinical Research Associates from the CFRI.

The Registry is accessible to permitted users only (e.g., specialist CF consultants) through the internet. The information that is stored in the database is taken from hospital medical charts.

Every hospital that participates has approved of the Registry through their Ethics Committee. A list of all participating hospitals and principal investigators is available through the Chief Executive.

It is important to realise that only the hospital consultant (plus designated members of staff, such as CF specialist nurses) and CFRI staff has access to a patient's records through the Registry. A consultant will only have access to personal data of his/her own patients. He/she will be able to see medical information about other consultants' patients, but not their personal details. For further information regarding security of data, please go to Description of the Registry - Security Issues.