In this section
What is the Cystic Fibrosis Patient Registry?
The Cystic Fibrosis (CF) Patient Registry collects information on the health status of people with cystic fibrosis who receive care in CF Foundation-accredited care centers and agree to participate in the registry. This information is used to create CF care guidelines, assist teams providing care to individuals with CF or CRMS, and guide quality improvement initiatives at care centers. Researchers also use this registry to study CF treatments and outcomes and to design CF clinical trials. More information about the registry can be found on the Cystic Fibrosis Foundation (CFF) website.
What do I have to do?
A member of the Children’s Hospital of Wisconsin (CHW) CF Care Team will discuss the CF Patient Registry with you during a clinic visit. If you agree to participate in the registry, you will be asked to sign a consent form. By signing the consent form, you are giving the CF Care Team permission to enter information into the registry about your health and treatment. This information is submitted electronically to the (CFF) by the CHW CF Patient Registry Coordinator.
How long will I be in the registry?
The CF Patient Registry is a permanent registry of health information and your authorization for disclosure of health information to the registry will be effective for as long as the CF Patient Registry information is collected. If you consent, we think you will be in this registry for the rest of your life.
Can anything bad happen if I agree to participate?
Your health and treatments are simply being monitored. There are no anticipated physical risks or discomforts for participating in the CF Patient Registry. The main risk of taking part in the registry is that your information could become known to someone who is not involved in performing or monitoring the registry. The CFF maintains this information in a comprehensive, secure database that is protected with passwords and encryption codes.
Will participating help me in any way?
There may or may not be individual benefits. We hope the information learned from the CF Patient Registry will help researchers, physicians and other clinicians better understand the natural progression of CF and CRMS. The CF Care Team can provide you with a health summary report from the registry. The registry may also help the CF Care Team tell if you may be eligible for CF related research studies.
Do I have to participate?
Taking part in the CF Patient Registry is voluntary. If you decide you do not want to participate, you will not be treated differently, and your health care will not be affected in a negative way. You can stop taking part in the registry at any time without any penalty. Feel free to ask the CF Care Team any questions you have about the CF Patient Registry.