Research driven by care
Dedicated to family-centered care and education, Children's cystic fibrosis (CF) program diagnoses and treats children with all stages of cystic fibrosis. Our program ranks among the top 10 in the country in key outcomes measured by the National Cystic Fibrosis Regsistry. Through our bedside research initiatives, we're making a difference in the lives of children with CF.
CF study #1: Quality improvement when diagnosing cystic fibrosis in newborns
A study led by Renee Temme, MS, CGC, genetic counselor at Children's, evaluated if parental knowledge about the genetics of CF and their child's CF carrier status following genetic counseling improved when a short educational video was viewed after counseling.
Minnesota started screening all babies for CF March 1, 2006. Diagnosing cystic fibrosis at an early age provides many benefits, including early initiation of treatment. Some carriers for CF are identified through the NBS process. All infants with one or two CFTR gene mutations identified have follow-up sweat chloride testing around one month of age.
Children's set out to improve parental understanding of the genetics of CF and their child's CF carrier status by creating a short educational video about positive newborn screening results and the genetics of CF. Children's researchers also assessed resources used by families before and after the appointment. Read more »
» Request Renee Temme, MS, CGC, genetic counselor at Children's to speak to your team about newborn screening for cystic fibrosis, CFTR-related metabolic syndrome and other CFTR-related disorders.
the educational video about positive NBS results and the genetics of cystic fibrosis.
Other CF studies
• CF study #2 - Core strengthening and respiratory exercise program
• CF study #3 - Yoga in CF patients
Cystic fibrosis research team
This team helps facilitate nearly 20 CF studies annually. Contact them to learn more about CF research at Children's.