Outstanding outcomes in cystic fibrosis care

Choosing where to bring your child for cystic fibrosis (CF) care is a major decision. You need all the information you can get. We know you want it in a clear, straight-forward form that helps you make the right choice for your family.

That’s why we share our outcomes with you. In medicine, “outcomes” measure the end results of a treatment. They’re an objective way of gauging how good a hospital is at treating your child’s condition. As you’ll see, the CF outcomes at Children’s Minnesota are outstanding.

The numbers below help show you how Children’s is delivering quality care. The categories are ones chosen by the Institute of Medicine as good measures of health care quality.

Outcomes highlights

Children’s efforts have translated into better lives for our patients. Key highlights include:

  • Breathing easy. Our center maintains normal lung function in patients 6–17 years old. Lung function is often measured by an FEV1 (forced expiratory volume in 1 second) which is the largest breath someone can breathe out and is an important way to check lung health in people with CF.
  • On alert for diabetes. We continue to monitor all of our patients for cystic fibrosis related diabetes (CFRD) with yearly oral glucose tolerance tests (OGTT). These are screenings to test for, a type of diabetes that people with CF can get.
  • Successful collaborations. We have participated in Learning and Leadership Collaboratives with the CF Foundation to improve the care we provide to our patients. For example in one initiative, we developed our own quality improvement project to improve our screening for CFRD.

Clinical trials — the path to new cystic fibrosis treatments

Clinical trials are integral to finding new treatments for CF and a possible cure. We’re active in clinical trials and continually rank among the top CF centers for efficiently enrolling patients in both treatment and observational research studies. In fact, Children’s is an accredited site for research through the Therapeutic Development Network. This allows our patients to take part in our own clinical trials — both observational and interventional studies — as well as those at other CF centers around the world.

Please contact us for more information:

Elizabeth Franck Thompson, MPH, ACRP – CP
Clinical Research Manager, Pulmonary and Diabetes/Endocrinology
Phone: 612-813-6347

Priya Balaji, BS
Clinical Research Coordinator
Phone: 612-813-7756

Tori Estes, MA, CCRC
Clinical Research Coordinator
Phone: 612-813- 6492

Studies currently open for enrollment

For information on research studies here and at other CF Centers in the country, visit the Cystic Fibrosis foundation clinical trial finder.

The reason for research: Improving your child’s life

At Children’s, we focus on research and innovations that make a difference at the bedside. From improving day-to-day quality of life for children and teens, to developing new pain management approaches and adopting cutting-edge technologies, our research is completely kid-and-family focused.

Children’s is engaged in many types of research, including investigator-initiated studies (led by a Children’s clinician), as well as externally sponsored multicenter trials, observational studies and registries. Over the past 10 years Children’s CF research program has participated in over 60 CF research studies.  As part of the therapeutic development network (TDN) our program was ranked third in the nation among 89 participating centers for patient enrollment in research , almost 17% of our patient population.

PortCF Registry

Additional education materials

Reliable information about conditions and illnesses is important. Search our patient and family education materials to learn more about a specific condition, illness or diagnosis.