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.
At your next CF Clinic visit: Experience of Care Survey
At your next CF Clinic visit: 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, contact Sarah CF Social Worker at sbilinski@iuhealth.org
Courtesy of the Cystic Fibrosis Foundation
Orkambi Update
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.
Coronavirus (COVID-19) Update for our Patients in the Cystic Fibrosis Program
Coronavirus (COVID-19) Update for our Patients in the Cystic Fibrosis Program
Events surrounding the coronavirus (COVID-19) situation are continually changing and much remains unknown. However, we want to provide you with the most current status of things at the Cystic Fibrosis Program at Riley Children’s Health.
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 CF Foundation supports the current recommendations made by the CDC. The CDC updated masking guidance, adopting a three-tiered framework — low, medium, and high.
The level is based on the number of new cases per 100,000, the number of new hospital admissions per 100,000, and the percent of staffed inpatient beds occupied by COVID-19 cases, all three metrics based on the previous 7 days. The agency does not recommend masks for those living in communities in the low-level category. Indoor masking (including schools) is recommended for those living in communities in the high-level category.
People who are immunocompromised or at high risk for severe disease should speak with their health care provider about masking in communities at the low or medium-community level.
At all levels, people can wear a mask based on personal preference, informed by their personal level of risk. People with symptoms, a positive test, or exposure to someone with COVID-19 should wear a mask.
Although school systems have removed masking mandates, many children with CF are uncomfortable attending school without a mask because of health concerns. You can also refer to CF and School During COVID-19 for general information and additional downloadable resources.
COVID-19 community levels by county can be found on the CDC website.
The importance of Flu Vaccine in Children with CF and their families
Seasonal influenza vaccines are now available! We highly recommend vaccination for infants and children 6 months and older; there is a high probability for viral co-infections this Fall and Winter. The annual flu vaccine remains safe, and effective at decreasing severe hospitalization in children. We have vaccines available in clinic 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 clinic 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.
CF Foundation Virtual Town Hall
Additional Resources
Returning to School
- Tips from the Cystic Fibrosis Foundation on how to handle being back at school.
Maintaining Emotional Wellness
- A resource on emotional wellness from the Cystic Fibrosis Foundation on how to manage school and daily care routines.
Potential Mental Health and Research Opportunities
- Flyers for research projects to help teens and caregivers dealing with stress or anxiety.
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.
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.
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.
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.
Doctors and
Locations
Doctors
Services and care provided through the Cystic Fibrosis Program are coordinated through our specialized pediatric gastroenterology and pulmonology doctors.
4.8 out of 5 stars
(176 ratings)
Score is an average of all responses to care provider related questions on our nationally-recognized NRC Health Patient Experience Survey.
Learn About SurveyPediatric Gastroenterology
317.944.3774
4.7 out of 5 stars
(48 ratings)
Score is an average of all responses to care provider related questions on our nationally-recognized NRC Health Patient Experience Survey.
Learn About SurveyPediatric Pulmonary
317.948.7208
4.9 out of 5 stars
(64 ratings)
Score is an average of all responses to care provider related questions on our nationally-recognized NRC Health Patient Experience Survey.
Learn About SurveyPediatric Pulmonary
317.948.7208
4.9 out of 5 stars
(204 ratings)
Score is an average of all responses to care provider related questions on our nationally-recognized NRC Health Patient Experience Survey.
Learn About SurveyPediatric Pulmonary
317.948.7208
4.8 out of 5 stars
(33 ratings)
Score is an average of all responses to care provider related questions on our nationally-recognized NRC Health Patient Experience Survey.
Learn About SurveyPediatric Pulmonary
317.948.7208
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.
Riley Pediatric Pulmonology & Respiratory Care
575 Riley Hospital Dr
Indianapolis, IN 46202
Riley Pediatric Gastroenterology, Hepatology & Nutrition
11725 N. Illinois St.
Carmel, IN 46032
Program Forms & Resources
Program Forms & Resources
The Cystic Fibrosis Program at Riley at IU 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
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What To Do When Your Child Is Sick (Riley at IU Health)
This handout provides helpful information for parents.
Resources
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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.
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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.
Related Stories
Related Stories
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Tips for dealing with the formula shortage
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.
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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
Riley at IU Health works with referring physicians in Indiana and beyond.
Refer A PatientEducation
The physicians at the Cystic Fibrosis Program at Riley at IU Health serve as faculty who help train medical residents and fellows.