Cystic Fibrosis (CF) Study For Children, Teens and Adults 6 to 21 Years Old

Why are we doing this research?

Cincinnati Children’s is conducting a research study, sometimes known as a clinical trial or clinical study, to learn more about the use of some new sensitive tests being developed for patients with CF to measure changes in their lungs.

These new tests include:

  • Magnetic resonance imaging (MRI) using a breathable gas called xenon to improve the pictures of changes in the lungs
  • Lung clearance index (LCI) that measures how well the lungs are working

Who can participate?

Children, teens and adults 6 to 21 years old with CF:

Who are not yet taking the new CF drug called Orkambi (approved by the FDA for children 6 and older)

or

Who are not eligible to take Orkambi

Conditions

  • Chest and Lungs - Respiratory Tract

What will happen in the study?

This study involves 4 study visits to Cincinnati Children’s over the next 3 to 4 years. When possible, we will try to schedule the study visits on the same day of your or your child’s annual CF checkup visits or a scheduled chest CT scan.

You or your child will have:

  • A medical review
  • Spirometry tests
  • LCI tests – while sitting, you or he/she will breathe in and out through a mouthpiece with a nose clip into the LCI machine, breathing both regular air and with 100% oxygen
  • An optional CT scan to take a picture of the lungs using an X-ray
  • MRIs using xenon gas – you or he/she will put your or his/her mouth on a straw-like tube connected to a bag of xenon gas, take a breath and hold it, and release it back into the bag while in a MRI scanner

You, as the participant, or parents interested in having their child participate will be given a consent form that thoroughly explains all of the details of the study. A member of the study staff will review the consent form with you and will be sure that all of your questions are answered.

What are the good things that can happen from this research?

You or your child may not receive a direct medical benefit from being in this study right now. However, when we complete this study, we hope that we will know more about better tests to monitor CF and changes in the lungs. This may help children and adults with CF in the future.

What are the bad things that can happen from this research?

Possible risks and discomforts will be discussed with adults, parents or guardians interested in learning more about the study.

Will you/your child be paid to be in this research study?

Participants will receive $100 for each completed study visit, as reimbursement for time and effort.

Contact

Contact Us.Kelly Thornton
513-636-0604
kelly.thornton@cchmc.org
Pulmonary Medicine
Cincinnati Children’s Hospital Medical Center
3333 Burnet Ave.
Cincinnati, OH 45229-3039

Study Doctor

Contact Us.Jason Woods, PhD
Pulmonary
Cincinnati Children’s Hospital Medical Center

John Paul (JP) Clancy, MD
Pulmonary Medicine
Cincinnati Children’s Hospital Medical Center

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