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. And you want it in a clear, straightforward 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 Hospitals and Clinics of 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.

Hitting the mark

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.
  • Successes in CFRD (Cystic fibrosis-related diabetes). We recently participated in a Learning and Leadership Collaborative with the CF Foundation. Here, we developed our own quality initiative to improve our screening for CFRD.

Clinical trials — the path to new treatments

Clinical trials are integral to finding new treatments for CF and a possible cure. We’re active in both 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:

Mahrya Johnson
Clinical Research Program Manager
Phone: 612-813-6384
[email protected]

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

Studies currently open for enrollment

  • Saline Hypertonic In Preschoolers (SHIP-001): Patients with CF ages 36-72 months may be eligible.
  • High-Frequency Chest Wall Oscillation Therapy Adherence: Utilization of Novel Data Reporting Technology to Measure Adherence among Children and Adolescents with Cystic Fibrosis

Please contact Mahrya Johnson or Christine Benoit for more information about possible participation.

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.

Research studies are ongoing in all areas of the hospital and clinics, but read more about cystic fibrosis research below:

  • “Bordetella bronchiseptica in a Pediatric Cystic Fibrosis Center.” Journal of Cystic Fibrosis. September 2013.
  • “Increased Adherence to CFF Practice Guidelines for Pulmonary Medications Correlates with FEV1.” Pediatric Pulmonary. August 2013.
  • “CF versus CRMS: Diagnostic Challenges in Cystic Fibrosis.” Minnesota Medicine. October 2012.
  • “Comparison of Quantitative Sweat Chloride Methods After Positive Newborn Screen for Cystic Fibrosis.” Pediatric Pulmonology. August 2012.
  • “Inhaled Hypertonic Saline in Infants and Children Younger Than 6 Years with Cystic Fibrosis. The ISIS Randomized Control Trial.” JAMA. June 2012.

Current studies

(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 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 809-109) 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

VX15-809-110: 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 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)

(VX12-809-105) 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

SHIP (Saline Hypertonic in Preschoolers) Study

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

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

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)

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

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

The Effect of Long Term Use of Inhaled N Acetylcysteine on Cystic Fibrosis Lung Disease Clinical Outcomes in Pediatric Patients with CFTR-Related Metabolic Syndrome

FIND A DOCTOR

GET EDUCATED

At Children’s, we know how important reliable information about conditions and illnesses is.