Who can take part?
People with cystic fibrosis in the Republic of Ireland. Participation is entirely voluntary. The more people that participate, the better the quality of the information that can come out of the registry. Nearly every person with CF in Ireland is on the registry.
Why should a person with CF take part?
Participating in the registry has indirect benefits in terms of having better information that can help improve planning and delivery of care and services that you (or your child) receives.
How can I (or my child) take part?
Your CF team will invite you/your child to take part. Your CF team will discuss the registry with you during a hospital visit, and answer any questions you have. You (and your child) will be given an information booklet and asked to fill out a consent form.
You are free to revoke your consent and withdraw from the registry at any time and can do so by calling 01-716 3177 or emailing firstname.lastname@example.org.