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. Children’s rates among the top centers in the country for a breathing test called FEV1 (Forced Expired Volume after 1 second of blowing out) for patients between ages 6 and 17. This test measures 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 are one of the top performing cystic fibrosis center for glucose screening and are the top center for oral glucose tolerance testing for patients ages 10 and older. These are screenings to test for cystic fibrosis related diabetes (CFRD), a type of diabetes that people with CF can get.
  • Successful collaborations. We have participated in numerous Learning and Leadership Collaboratives with the CF Foundation. For example in one initiative, we developed our own quality 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,
Sr. Clinical Research Coordinator
Phone: 612-813-6347

Christine Benoit
Sr. Clinical Research Coordinator
Phone: 651-220-6254
[email protected]

Anne Mills
Clinical Research Coordinator
612-813-7756

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.

Early Pseudomonas Infection Control (EPIC) Observational (Phase 2)

PortCF Registry

A Prospective, 5-year Registry Study to Monitor the Susceptibility to Aztreonam of Pseudomonas aeruginosa (PA) Isolates from Patients with Cystic Fibrosis in the United States [AIR-CF5]

(Vertex 105) A Phase 3, Rollover Study to Evaluate the Safety and Efficacy of Long-term Treatment With Lumacaftor in Combination With Ivacaftor in Subjects Aged 12 Years and Older With Cystic Fibrosis, Homozygous or Heterozygous for the F508del CFTR Mutation

A Long-Term Prospective Observational Safety Study of the Incidence of and Risk Factors for Fibrosing Colonopathy in US Patients with Cystic Fibrosis Treated with Pancreatic Enzyme Replacement Therapy: A Harmonized Protocol Across Sponsors (the “Study”) (Protocol No. CFFC-OB-11)

CRMS Retro and Prospective Review

The Effect of Long Term Use of Inhaled N Acetylcysteine on Cystic Fibrosis Lung Disease

SHIP (Saline Hypertonic in Preschoolers) Study

(Vertex 661-106) A Phase 3, Randomized, Double-Blind, Placebo-Controlled, Parallel-Group Study to Evaluate the Efficacy and Safety of VX-661 in Combination With Ivacaftor in Subjects Aged 12 Years and Older With Cystic Fibrosis, Homozygous for the F508del-CFTR Mutation

(Vertex 809-109) A Phase 3, Double‑Blind, Placebo‑Controlled, Parallel‑Group Study to Evaluate the Efficacy and Safety of Lumacaftor in Combination With Ivacaftor in Subjects Aged 6 Through 11 Years With Cystic Fibrosis, Homozygous for the F508del‑CFTR Mutation

(Vertex 661-107) A Phase 3, Randomized, Double Blind, Placebo Controlled, Parallel Group Study to Evaluate the Efficacy and Safety of VX-661 in Combination With Ivacaftor in Subjects Aged 12 Years and Older With Cystic Fibrosis, Heterozygous for the F508del CFTR Mutation and With a Second CFTR Mutation That Is Not Likely to Respond to VX 661 and/or Ivacaftor Therapy (F508del/NR)

The Impact of Insulin Therapy on Protein Turnover in Pre-Diabetic Cystic Fibrosis Patients

(Vertex 661-110) A Phase 3, Open-label, Rollover Study to Evaluate the Safety and Efficacy of Long-term Treatment With VX-661 in Combination With Ivacaftor in Subjects Aged 12 Years and Older With Cystic Fibrosis, Homozygous or Heterozygous for the F508del-CFTR Mutation

(Vertex 809-110) A Phase 3, Rollover Study to Evaluate the Safety and Efficacy of Long-term Treatment with Lumacaftor in Combination With Ivacaftor in Subjects Aged 6 Years and Older With Cystic Fibrosis, Homozygous for the F508del CFTR Mutation

(Vertex 809-115)A Phase 3, 2-Part, Open-label Study to Evaluate the Safety and Pharmacokinetics of Lumacaftor/Ivacaftor Combination Therapy in Subjects Aged 2 Through 5 Years With Cystic Fibrosis, Homozygous for the F508del-CFTR Mutation

High-Frequency Chest Wall Oscillation Therapy Adherence: Utilization of Novel Data Reporting Technology to Measure Adherence among Children and Adolescents with Cystic Fibrosis

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