What to Expect at Your First Appointment at the Cystic Fibrosis Center

While most people with cystic fibrosis (CF) receive a diagnosis before the age of 2, some are diagnosed as older children or as adults. Diagnosis is a multi-step process — it often starts with a newborn screening test performed by the state. If the screen is abnormal, you will be contacted by the Cystic Fibrosis Center coordinator to review the results and determine next steps.

You and your child will be scheduled for an appointment in the Cystic Fibrosis Center, and a sweat test will be scheduled right before your appointment. If your child has already had a positive sweat test, you are ready to start the treatment process.

Your first visit will primarily be all about education — learning what resources and treatments are available for your child.

Making an Appointment at the Cystic Fibrosis Center

We want it to be easy for you to get the care your child needs. You can contact us directly to schedule an appointment. Or, your child’s pediatrician or provider can refer your child to our center. We also take referrals from the emergency department and other hospitals.

Before Your Appointment

A nurse will contact you before your child’s appointment to prepare for the upcoming visit. During this call, we will:

• Gather information about your child’s health.
• Collect past test results and medical records (We’ll provide instructions on how to share this information with us.).
• Provide pre-visit instructions.

During this call, we can also answer questions you have before your child’s visit. Of course, you’re welcome to call any time before or after your child’s visit.

On the Day of Your Visit to the Cystic Fibrosis Center

Arriving At Your Appointment

The Cystic Fibrosis Center is located on the Cincinnati Children’s main campus in Location C (Outpatient Services Building) on the fifth floor. You will need to arrive about 30 minutes before your child’s appointment — 15 minutes to park and walk to our clinic and 15 minutes to check in at our registration desk.

If you are running late, please contact us.

At Your Appointment

This appointment will depend on whether your child has already undergone a sweat test. If they did, and it was positive, we will discuss your child’s treatment plan, which will include frequent visits to monitor them. Unless your child has already been experiencing breathing problems or other issues, this visit will be primarily informational. We want to establish a relationship with you and your child so you feel comfortable working with our team to develop a plan of care.

After Your Visit to the Cystic Fibrosis Center

You will receive an “After Visit Summary” at the end of your appointment, which includes instructions about the plan of care, test results, referrals to specialists, all medications (including new prescriptions), and upcoming appointments. It is important to schedule your next appointment before you leave. It will also include contact information for your child’s care team. We encourage families to sign up for MyChart to have access to their child's electronic medical record.