Cystic Fibrosis Program

Seattle Children’s takes an active approach to caring for children with cystic fibrosis (CF) so they can grow up as healthy as possible. We see your child regularly, closely monitor symptoms and provide education. We use the latest treatments to help your child stay well and slow the progression of the disease.

Our team of specially trained doctors, nurses, dietitians and respiratory therapists works with your family to create an individual care plan that is best for your child.

What is cystic fibrosis?

Cystic fibrosis is a lifelong (chronic) disease that affects glands throughout the body. It mostly affects the lungs and the pancreas. The condition makes it difficult to breathe, causes lung infections and prevents normal digestion.

One in 3,000 to 4,000 children born in the United States has CF. It is an inherited disease that currently affects about 30,000 children, teens and young adults nationwide and affects people from diverse races and ethnicities.

Why choose Seattle Children’s Cystic Fibrosis Program?

Seattle Children’s Cystic Fibrosis Program is accredited as a Cystic Fibrosis Foundation Care Center. We have an experienced team of providers from different specialties dedicated to providing the care your child needs.

Although CF is considered a life-shortening disease, people with the condition are living longer. This is due to advances in care and a variety of treatment options. Up to the mid-1980s, people with CF rarely lived past their teens. Thanks to better treatment options — several of which were developed at Seattle Children’s — many patients now live into their 60s and beyond.

Your child and family get support

At Seattle Children’s, your family has a full team behind you, from diagnosis through treatment, follow-up and transition to adult care. From our appointment schedulers to our pediatric nurses, our team is specially trained to work with children with CF and their families. Our facilities and equipment also reflect this kid-friendly, family-centered approach.

We have a team of specialists, including nurses, respiratory therapists, social workers, dietitians, pharmacists, child life specialists and others who are here to provide you and your family whole CF care. We see families for many years because CF is a lifelong disease. We treat you and your child as partners every step of the way. Our team considers the social, emotional and cultural needs of the whole family. We listen to your concerns and work with you to make choices about diet, exercise and treatments that work best for your child.

As your child grows, we will teach them the self-care skills they will need to transition to adult care, such as managing their medicines, maintaining healthy diets and filling their own prescriptions. We partner with the University of Washington Adult Cystic Fibrosis Center to help them make that transition to adult care.
The experts you need are here

Our full team includes access to multidisciplinary experts in CF care, including specialists in pulmonary, endocrinology, gastroenterology and psychology. Our team of experts focuses on how today’s treatments will affect your child as they develop and become adults. We base treatment plans on years of experience and the newest research on what works best – and most safely – for children, teens and young adults. This experience helps us monitor your child’s condition and work with you to decide the best treatment.

Many members of our team are recognized around the world for their work in both clinical care and research. We are 1 of more than 200 CF centers in the nation accredited by the Cystic Fibrosis Foundation based on our specialized care, our participation in research and the education we offer community providers. We have been recognized with several awards, such as the CF Foundation Quality Care Award. We have affiliate centers in Tacoma, Washington, and Anchorage, Alaska. We also collaborate with the University of Washington Adult Cystic Fibrosis Center and the CF Center in Spokane.
We’re advancing cystic fibrosis research for children and teens

Seattle Children’s has been an international leader in CF research since the mid-1980s. We work closely with researchers at the University of Washington (UW), across the country and around the world on studies that are transforming the diagnosis, treatment and care of patients with CF.

This collaboration includes the CF Therapeutics Development Network (TDN), which Seattle Children’s and UW formed in 1998. This network includes 80 centers across the country. Its mission is to ensure quality and safety in CF clinical trials and to speed up the development of new and better CF treatments. We also participate in the CF Learning Network (CFLN), committed to collaboration with patients and families and continuous learning to achieve high-quality CF care for all people with CF.

Your child may be eligible to participate in a current clinical trial of a new therapy as we continue to study CF. Our research team is integrated into our clinics so you have access to the latest research and chances to participate. Learn more about CF research clinical trials.

Services We Provide

At Seattle Children’s, our team in the Cystic Fibrosis Program will work with you to make a treatment plan that reduces or eases symptoms and promotes normal development and growth.

We will work with you to develop a treatment plan based on:

Your child’s medical history, age and overall health
How the disease affects their body
Your child’s genetic change (mutation)
How your child reacts to procedures and treatments

Services may include:

Genetic counseling

CF is an inherited (recessive genetic) disease. This means both parents pass down 1 copy of a mutation (genetic change) to the cystic fibrosis transmembrane conductance regulator (CFTR) gene. People with 2 copies of CFTR gene mutations generally have CF. We will collect a small blood sample from your child to look for any changes in the CFTR gene.

Our will help you understand how CF is inherited, explain genetic tests and review family planning options.
Medical treatments
We use a variety of medicines to treat your child’s symptoms. We have pharmacists on our team to assist in obtaining the medications that best serve each family. These may include:
- Bronchodilators to open up the airway passages
- CFTR modulator treatments, a type of medicine designed to correct the defective CFTR protein made by the CFTR gene
- Medicines to thin or hydrate mucus
- Pancreatic enzyme replacement therapy, a type of medicine that mimics the normal function of the pancreas
- Multivitamins
- Antibiotics to treat infections
Nutrition

Children with CF have trouble absorbing calories, particularly from fat. Our will help you make meal choices that provide your child with the nutrition they need for healthy growth and development.
Respiratory therapy

Our respiratory therapists will teach your child ways to clear mucus from their lungs. They will also teach your child how to use devices to help them inhale (breathe in) certain medicines.
Referrals to other specialists

We may recommend that you see another specialist, depending on your child’s treatment plan. Providers we commonly refer patients to include endocrinologists, gastroenterologists, otolaryngologists and psychologists.
Support services

Our social workers will help your child and your family cope. They will put you in touch with resources in your community.

Our Child Life specialists work directly with your child to help them express concerns and feel more in control of their hospital experience. They can teach your child coping skills to ease the stress of throat swabs, blood draws and other uncomfortable procedures that are part of CF treatments.
Fitness training

Research shows children with CF who exercise regularly have milder symptoms and better outcomes. Our athletic trainers will help your child develop an exercise routine.

Scheduling an Appointment with the Cystic Fibrosis Program

If you have been diagnosed with cystic fibrosis and need a referral to our Cystic Fibrosis Program, talk to your primary care provider. If you have a referral, call the Cystic Fibrosis Program at 206-987-2024 and choose option 1. If you have a referral and your child has not been diagnosed, call the Pulmonary Medicine Clinic at 206-987-2174. One of the first tests done when diagnosing CF is a sweat chloride test (PDF) (Spanish). This must be scheduled with the lab, which can be reached at 206-987-3860, option 1.
If you already have an appointment, learn more about what to expect and how to prepare.
Learn about Cystic Fibrosis Program resources such as useful links, videos and recommended reading for you and your family.

Telemedicine at Seattle Children’s

Your child’s first appointment in our clinic will be in person and take about 90 minutes. Later visits may be offered via telehealth (virtual). Learn more.

Participate in Research

You can help us answer questions about childhood health and illness and help other children in the future. Learn more about clinical trials and research studies at Seattle Children’s.

Contact Us

For more information, contact the Cystic Fibrosis Program at 206-987-2024. If you would like an appointment, ask your child’s primary care provider for a referral.

Providers, see how to refer a patient.