What is the CF Registry?
The CF Registry records and analyses information about the health and treatment of people with Cystic Fibrosis in the UK. It also records the number of people in the UK with CF and where they are. The information is held on a secure and confidential computer database.
The CF Registry is paid for by the Cystic Fibrosis Trust. It replaces the UK CF Database, which has collected this information in the past from all patients whose parents gave their consent. If you consent to your child taking part in the CF Registry, any information held in the UK CF Database will be transferred into the CF Registry.
Why have a CF Registry?
CF is a complicated condition that affects a relatively small number of people. By bringing together and analysing the information on all of them, we can understand better the different things that affect people with CF and how different treatments affect them. Doctors can learn from this and provide better care for people with CF in the future.
What information is kept in the CF Registry?
The information kept in the CF Registry is similar to the information that is recorded during your child’s usual visits to your CF Centre or Clinic: height, weight, lung function tests, respiratory cultures, x-ray results, and the results of other tests carried out at the hospital. The CF Registry also holds information about the treatments and the drugs given to your child, along with details of any complications that he or she may have.
Do I have to take part?
It is up to you and your child whether or not you decide to take part in the CF Registry. If you do decide to take part you will be given this information sheet to keep and asked to sign a consent form.
Your child’s care will not be affected in any way if you decide not to take part.
Paediatric network report for Birmingham - based on 282 patients from paediatric care centres with complete* data at 2013 annual review
Summary Report compiled July 2014
Report compiled July 2014