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Cystic Fibrosis Program

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Cystic fibrosis (CF) is a genetic condition that affects a child’s lungs and digestive tract. This can lead to problems with nutrition and growth. The Cystic Fibrosis Program at Riley at IU Health is highly experienced in working with children and families living with cystic fibrosis.

The bodies of children with CF produce a thick, sticky mucus that clogs the airways in the lungs and leads to serious lung infections. This mucus also affects the esophagus, stomach and intestines which can cause poor nutrition and growth.

Our medical team uses a multidisciplinary approach. Doctors and other medical professionals who work in the Cystic Fibrosis Program are specialists in gastroenterology, pulmonology, nursing, nutrition, respiratory therapy, social work, pharmacy and genetic counseling.

The Cystic Fibrosis Program at Riley at IU Health works with children and families from Indiana as well as other states. The Cystic Fibrosis Center at Riley at IU Health is the only pediatric center accredited by the Cystic Fibrosis Foundation in the state of Indiana and one of 115 care centers in the United States. Treatment of CF continues to advance as the Cystic Fibrosis Program at Riley at IU Health and other centers partner with the Cystic Fibrosis Foundation to improve care and the quality of life for patients.

Many children with CF live well into adulthood—today people with CF are expected to survive to an average age of 38. At Riley at IU Health, we work with children and their families to move the child into an adult program. This planned preparation includes:

  • At age 12, the CF team will address all questions directly to the child. Parents can go into the exam room with their child or children.
  • By age 14, each child will be seen by his or her healthcare team without the parent. The CF doctor meets with parents to review the plan and answer questions.
  • Between the ages of 18 to 20, patients will begin care with the Adult Cystic Fibrosis Program.

At Riley at IU Health, the health results data for our Cystic Fibrosis Program is reported to the public. Data for all CF centers can be found at the Cystic Fibrosis Foundation website. The goal of this effort is to accelerate the quality of care and improve the relationship between patients, families and the care center.

In-utero therapy for fetal cystic fibrosis

Recent research is also exploring the use of prenatal ETI (elexacaftor-texacaftor-ivacaftor, or also known as Trikafta) during pregnancy to improve outcomes for fetuses diagnosed with CF.

By administering the triple-combination modulatory therapy to the mother, fetal exposure to the medication may improve CFTR (cystic fibrosis transmembrane conductance regulator) function in the developing fetus. This may potentially reduce the severity of CF bowel-related symptoms before birth.

Note that the use of ETI during pregnancy is a recent development, there is currently minimal data on the short-term and long-term health benefits. Further research is important to fully understand its safety and efficacy during pregnancy.

Latest Updates

Latest Updates

At Your Next Cystic Fibrosis Appointment: Experience of Care Survey

What is the Experience of Care (XoC) Survey?

The XoC is a short and easy to take survey that asks about in-person and virtual care experiences here at Riley. The survey includes questions about infection prevention and control, the way the care team responds to your questions and concerns, care planning, and overall communication and quality of the care experience. Patient responses are kept anonymous and are not linked to you or your child’s name or birthdate.

Why is the survey important?

Creating a better experience at your clinic visits is important to all of us — physicians, professional staff, patients, and families. The data and narrative comments captured in this new survey will aid our clinic team in working with our patients and families to form positive relationships, build trust, and partner to improve care.

Data Collection and Invitation Processes

Starting in 2024, the Riley CF Center has a unique URL/QR code to share with patients and families during routine CF visits. This QR code will invite you to participate in taking an XoC survey. When you come to CF clinic, we will share the QR code with you. Answers provided will be linked back to our program’s dashboard (but not to you or your child).

Program-level Report Reports

Data are reported in real-time, i.e., you completes a survey, the results are immediately visible for review. We see over 40 children with CF every week, so you will remain anonymous. Access to the reports is currently limited to the XoC Champions from our program. Summary results will be shared intermittently as we seek to address any concerns.

If you would like more information about being a Champion for Riley, email sbilinski@iuhealth.org

Courtesy of the Cystic Fibrosis Foundation

Orkambi Update

Orkambi is now approved for use in children with cystic fibrosis ages 1-2 years who have two F508del mutations.

We are very excited that the FDA has approved the use of the highly effective modulator therapy known as Trikafta® for use in children with cystic fibrosis who are ages 2 through 5 years. This announcement was released on April 26, 2023. This medication approval is for children who have at least one copy of the F508del mutation, or a few specific other mutations. Our CF center is working quickly to review all of the children we care for who are now eligible. We will discuss this with you at one of your upcoming clinic visits if you are scheduled to see our team within the next two months. Otherwise, you will hear from a CF team member in the coming weeks if your child will qualify and discuss starting on this therapy. Please contact our clinic if you have specific questions for your provider. We appreciate your patience as we identify children currently not receiving any modulator therapy, and move on to those who are eligible to transition from Orkambi®. For more information on Trikafta® and FDA approval for younger children, please visit: https://www.cff.org/news/2023-04/trikafta-approval-ages-2-5-mutations.

COVID-19 Updates

Current mask recommendations

Riley Children’s Health no longer requires masking in public or clinical areas for team members, patients, visitors and families. The Cystic Fibrosis Program will return to prior recommendations: All patients should wear masks when going through the hospital and may remove them once in a clinic room.

The importance of flu vaccine in children with CF and their families

We highly recommend flu vaccination for infants and children 6 months and older. The annual flu vaccine remains safe and effective at decreasing severe hospitalization in children.

We have vaccines available which can be given at the time of your child’s scheduled visit. Our center is also offering free family flu vaccines for those caregivers and siblings who accompany patients to clinic. If you are interested in a flu vaccine for your child or yourself at time of a visit, please notify staff when you are being roomed. You can also obtain your flu vaccine through primary care physicians, health department and local pharmacies.

Cystic Fibrosis e-Newsletter

Sign up today for our quarterly e-newsletter to get up-to-date information for your child or loved one with cystic fibrosis. To read archived articles from past newsletters, visit the Riley Children's Health Connections Blog.

Sign Up for Cystic Fibrosis e-Newsletter

Conditions & Services

Conditions Treated

We treat most Cystic Fibrosis conditions. Below is more information about some, but not all, of the conditions that we treat.

  • Cystic Fibrosis

Services Offered

We offer a number of different Cystic Fibrosis services. Below are some, but not all, of the services that we provide. If you have a question about a specific service that is not listed here, please contact our program.

  • Blood Tests
  • Breath Tests
  • Newborn Screening
  • Pulmonary Function Testing
  • Stool Tests

Doctors and Locations

Doctors

Services and care provided through the Cystic Fibrosis Program are coordinated through our specialized pediatric gastroenterology and pulmonology doctors.

Locations

Locations

In addition to our primary hospital location at the Academic Health Center in Indianapolis, IN, we have convenient locations to better serve our communities throughout the state.

Sort through 6 facilities offering Cystic Fibrosis Program care by entering your city or zip below.

See all facilities →

Program Forms & Resources

Program Forms & Resources

Riley Children's Health provides the following forms for parents, healthcare providers and personnel. We have also curated relevant resources from other websites and provided links with brief descriptions of the information that is available.

Forms

  • What To Do When Your Child Is Sick (Riley at IU Health) 243.711 KB

    This handout provides helpful information for parents.

Resources

  • Cystic Fibrosis Foundation

    This foundation researches and develops new medicines to fight CF, improve the quality of life for those with CF and ultimately find a cure. Call the Indiana Chapter at 317.202.9210.

  • The Center for Youth & Adults With Conditions of Childhood

    The CYACC provides transition consultation, education and care coordination across all diagnoses. The team works with children and their families to create a portable medical summary and transition plan.

Related Departments

Related Departments

We provide multispecialty care for a number of conditions. Below are links to our related departments.

  • Pediatric Gastroenterology, Hepatology & Nutrition
  • Medical & Molecular Genetics
  • Pediatric Pulmonology & Respiratory Care

Related Stories

Related Stories

Blog Piper Norris

In-utero therapy for cystic fibrosis: Baby Piper's CF journey

03/16/25 Patient Stories

A Plainfield mom was the first Riley patient to take Trikafta while pregnant to help her daughter, who was diagnosed with CF before birth. Both are doing well today.

Continue reading
Blog Formula Shortage 1

Infant formula shortage do's and don'ts

05/26/22

We understand the infant formula shortage has been a source of anxiety and stress for thousands of families in Indiana. We at Riley Children’s Health want to share some information with the goal of keeping your baby fed and healthy. Below you will find some tips and helpful resources.

Continue reading
Blog Getty Images 1018416962

Tips for dealing with the formula shortage

05/26/22

Dr. Emily Scott, medical director of the Riley Early Years Program, says she's heard from many stressed out parents who are driving from one store to another to find the right formula for their baby.

Continue reading
Blog Cystic Fibrosis Family Advisory Board

Tips for Traveling with Little Ones with Cystic Fibrosis

08/22/19 Cystic Fibrosis Newsletter

This newsletter was created by the Cystic Fibrosis Family Advisory Board at Riley. If you have ideas for future newsletter topics, please email them to rileycf.fab@gmail.com.

Continue reading

Health Professionals

For Health Professionals

The specialists at the Cystic Fibrosis Program at Riley at IU Health work closely with referring physicians from across Indiana. Program physicians are actively involved in research to find better treatments they can use to care for patients. Our team also plays a role in training medical residents and fellows.

Refer A Patient

Refer A Patient

Riley at IU Health works with referring physicians in Indiana and beyond.

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Education

The physicians at the Cystic Fibrosis Program at Riley at IU Health serve as faculty who help train medical residents and fellows.

Education Resources:
  • Medical Students
  • Residents
  • Fellowship
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