To encourage participation, care teams and researchers often are willing to work together to coordinate schedules so that regular CF centre visits can take place on the same day as the research visit. Appointments can be moved to the beginning or end of the day to accommodate your work schedule.
If you believe there are other obstacles to participating, your research team might be able to engage in some creative problem solving with you to overcome potential barriers. For example, some parents have had problems with schools allowing time off for children with CF to participate in clinical trials. Your CF centre clinician can send a letter to the school, stating why your child needs to participate.
They can also help solve specific problems that might arise. As a case in point, a student with CF had his research facility arrange for him to get his trial’s routine blood draws taken at a hospital close to his school. This saved him (and his parents!) from spending over two hours at a time getting to and from the research facility.