Who can participate?
Children at least 6 months old, teens and adults who have been diagnosed with CF or a CF-related disorder and who have at least one rare or unidentified mutation in the cystic fibrosis transmembrane conductance regulator (CFTR) gene may be eligible to participate. Participants should not have a severe nasal disease or an active infection.
What will happen in the study?
This study includes one study visit to Cincinnati Children’s, or if you live outside of the area, we will work with you to arrange a visit to a doctor or Cystic Fibrosis Center where a trained person can obtain a nasal sample from you.
These are the things that will happen in the study:
- Medical record review
We will record information from your (as the study participant) or your child’s medical records such as diagnoses, treatments and medications.
- Nasal brushings
We will rub a small brush inside each of your nostrils to collect cells.
- Storing cells for future research
Some cells will be used right away, but others will be frozen in the Pulmonary Biorepository (PBR), a bank where we store samples that can be used for future research.
You will be given a consent form that thoroughly explains all of the details of the study. A member of the study staff will review the consent form with you and will be sure that all of your questions are answered.
What are the good things that can happen from this research?
Being in this study may not help you right now. When we finish the study, we hope that we will know more about using nasal cells to test new medicines and treatments, as well as to study lung diseases. This may help people with lung diseases in the future.
Will you/your child be paid to be in this research study?
Participants will receive $20 for time and effort for being in this study.