How does one enrol on the Irish CF Registry?

Enrolment into the Registry is done through the specialist CF centers. When patients are admitted to hospital or attend their out-patient clinics, they will be asked if they would like to give their consent for their hospital records to be entered onto the CFRI computer. They will be given a copy of the Registry Information Booklet and asked to read it; later, a Clinical Research Associate from the CFRI will answer any questions that they may have. Afterwards they will be asked to sign a consent form. A copy of this signed form will be given to the patient, a copy will be placed in their hospital chart, and a copy will be sent to the Chief Executive who will keep it on file in the Registry office. Regular visits to the hospital will update information for each PWCF who is enrolled.

For the patient, there are no costs involved and there is no extra clinic time required.