Parents of newly diagnosed infants with CF will be informed of the study by their doctors in their primary care facility, and will be given the opportunity to have a lung function test done at the children’s clinic at the University of Bern.

At the time of the lung function, parents will receive more detailed information about the study and will then have the opportunity to ask any questions.  

Two visits to the children’s hospital in Bern for lung function measurements - the first between the ages of 6-10 weeks, and the second at the age of 1 year. Once per week during the first year of life, there will be a short telephone conversation with a Study Nurse. There will also be another visit to the children's hospital at the age of six years, and again at nine years, for the follow-up measurements. 

Results from the lung function measurement make possible an early recognition of lung function impairment, and could lead to an earlier and more targeted treatment strategy. Weekly contact with the study nurses, who have weekly contact with the other parents in the study, provide an opportunity to ask questions about daily life with a CF infant. Most importantly, thanks to your participation, valuable information will be collected that would go to benefit future CF patients.

All of the children’s personal data collected during the study will be encrypted. This information will only be accessible to the professional researchers involved with the study. Professionals from the Swiss National Science Foundation, as well as the ethics committees, can also have access to the original data. However, the name of your child will under no circumstance be reported or published as a result of their participation.