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Riley Children's Health

Rare Lung Disease Program

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Children of all ages receive advanced, family-centered care from pediatric pulmonologists in the Rare Lung Disease Program at Riley at IU Health. We partner with your child’s primary care doctor to provide comprehensive care for rare, complex lung conditions and abnormalities, immune system disorders and genetic lung conditions such as primary ciliary dyskinesia.

Depending on your child’s condition, care team members may include doctors from specialties such as pulmonology, ear, nose and throat, gastroenterology and radiology as well as dedicated specially trained nurses, social workers and pharmacists.

At your first appointment, our nurse coordinator will speak with you about concerns that you have with your child’s breathing. The nurse will ask about your child’s symptoms and any family history of breathing problems. You will then meet with one of our pulmonologists, who will review your child’s history and symptoms. The pulmonologist will also examine your child and may order diagnostic procedures. These may include bronchoscopy, pulmonary function testing and imaging tests such as X-ray and computed tomography (CT).

Nasal nitric oxide collection, which measures exhaled nitric oxide, and ciliary biopsy collection, which examines cilia specimens from the nasal passages, is also available. Both of these tests are used to diagnose primary ciliary dyskinesia.

After reviewing your child’s medical history and physical exam and diagnostic test results, the pulmonologist and care team will recommend a treatment plan that meets your child’s specific needs, which includes daily management and follow-up care with the pulmonologist. Expert care for your child is assured with access to the resources of Riley at IU Health.

Conditions & Services

Conditions Treated

Our pediatric specialists provide patient- and family-centered care for most related conditions. The links below provide more specific information about some, but not all, of the conditions that we treat.

  • Primary Ciliary Dyskinesia

Services Offered

We offer a number of different Rare Lung Disease Program 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.

  • Computed Tomography (CT Scan)
  • Pulmonary Function Testing

Doctors and Locations

Doctors

Our pulmonary doctors provide expert, family-centered care. Learn about the skills and specialties of our pediatric pulmonologists.

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

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575 Riley Hospital Dr
Indianapolis, IN 46202

317.948.7208

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Program Forms & Resources

Program Forms & Resources

The Rare Lung Disease 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.

Resources

  • PCD Foundation

    Patients and parents established the PCD Foundation to raise awareness and promote research for better treatments and a cure for primary ciliary dyskinesia.

Related Departments

Related Departments

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

  • Pediatric Pulmonology & Respiratory Care

Health Professionals

For Health Professionals

Pediatric pulmonologists at Riley at IU Health partner with you to provide advanced diagnosis and treatment for your patients. You can refer a patient and learn about our pulmonary research and education programs.

Refer A Patient

Refer A Patient

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

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Research

Visit the Section of Pediatric Pulmonology, Allergy and Sleep Medicine at Indiana University School of Medicine for information about the latest research in the field of pulmonology.

Education

As faculty members of the Indiana University School of Medicine, we help train the next generation of pediatric pulmonologists. Our Pediatric Pulmonology Fellowship Program provides post-residency training in an atmosphere of mentorship and collaboration.

Education Resources:
  • Medical Students
  • Residents
  • Fellowship
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Designated as Best Children's Hospitals by U.S. News & World Report, Ranked in 10 Specialties in 2020-21

©2023 Riley Hospital for Children at
Indiana University Health
Find adult services at iuhealth.org


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