Research

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.

Background
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.

Conclusion
The study findings reinforce the importance of genetic counseling and education for families with infants who screen positive for CF. The video increased parental understanding of the NBS results immediately following genetic counseling. Moreover, the knowledge was sustained for both video and non-video groups six weeks post-genetic counseling. Most parents reported they accessed resources available online about CF before coming in for follow-up testing. Therefore, the video is now available online for parents to view after finding out about their child's positive NBS result and before follow-up testing. Children's research team is also presenting the results at the October 2013 North American Cystic Fibrosis Conference.

Study led by Renee Temme, MS, CGC This e-mail address is being protected from spambots. You need JavaScript enabled to view it.

Learn more!

» This e-mail address is being protected from spambots. You need JavaScript enabled to view it. 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.

» Watch the educational video about positive NBS results and the genetics of cystic fibrosis.

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CF study #2: Children's researchers evaluate core strengthening and respiratory exercise program's effect on cystic fibrosis

This study examined the feasibility of the Core Strengthening and Respiratory Exercise Program, a customized outpatient physical therapy intervention including both a clinical component and an at-home component, in five children with CF.

Background
Skeletal and neuromuscular system impairments, which are common in children with CF, are interrelated and often result in loss of muscle mass, poor posture, pain and overuse of respiratory muscles.

When people with CF have poor posture and weakened core muscles, they inevitably lack the structural support necessary for optimal functioning of the lungs and other organs. This lack of structural support may lead to difficulties with daily activities, recreational activities and sports.

In this study, which included five participants between the ages of 11 and 17, Children's researchers monitored participants' exercise regimens three times per week for six months. The five main categories of outcome measures included:
• Pulmonary function
• Posture
• Aerobic capacity
• Rib cage mobility
• Core strength

Conclusion
All five participants demonstrated a clinical improvement in one or more measurements within at least three of the main categories when comparing baseline to follow-up measurements. In short, researchers ultimately concluded that children with CF live with impairments that ultimately may be improved with physical therapy. The participants completed satisfaction surveys in which they described being extremely satisfied with the program. Four of five participants planned to continue the program on their own.

Team of investigators
Julie Christiansen, PT
Lorre Thompson, PT
John McNamara, MD
Katie Fenlon, PT


Cystic Fibrosis Core Strengthening and Respiratory Exercise Program; Pediatric Pulmonology; supplement 33, 2010: 465.

Study led by Julie Christiansen, PT • This e-mail address is being protected from spambots. You need JavaScript enabled to view it.

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The Research and Sponsored Seminar Series is designed for Children’s staff, as a means of instruction on basic research principals. These seminars are intended for all employees with an interest in research, regardless of background. Mark your calendars for these upcoming sessions.

Wednesday, June 12
Noon to 1 p.m.
Minneapolis Front Education Center, second floor
“Clinical research methods: Cohort studies,” presented by Andrew Flood, Ph.D., career scientist, research and sponsored programs, Children’s Hospitals and Clinics of Minnesota.

Wednesday, June 19
Noon to 1 p.m.
Children’s Specialty Center, room 506
“Clinical research methods: Case-control studies,” presented by Andrew Flood, Ph.D., career scientist, research and sponsored programs, Children’s Hospitals and Clinics of Minnesota.

Wednesday, July 10
Noon to 1 p.m.
Minneapolis Front Education Center, second floor
“Clinical research methods: Systematic error/bias” presented by Andrew Flood, Ph.D., career scientist, research and sponsored programs, Children’s Hospitals and Clinics of Minnesota.

Wednesday, July 17
Noon to 1 p.m.
Children’s Specialty Center, room 506
“Clinical research methods: Confounding,” presented by Andrew Flood, Ph.D., career scientist, research and sponsored programs, Children’s Hospitals and Clinics of Minnesota.

Wednesday, Aug. 14
Noon to 1 p.m.
Minneapolis Front Education Center, second floor
“Clinical research methods: Effect modification/interaction,” presented by Andrew Flood, Ph.D., career scientist, research and sponsored programs, Children’s Hospitals and Clinics of Minnesota.

Wednesday, Aug. 21 – No presentation. Summer holiday.

Wednesday, Sept. 11
Noon to 1 p.m.
Location TBA

“Preparing for a successful continuing IRB review,” presented by Debra McKeehen, IRB administrator, Children’s Hospitals and Clinics of Minnesota.

Wednesday, Sept. 18
Noon to 1 p.m.
Minneapolis Front Education Center, second floor
“Is there bias in emergency room triage levels?” presented by Rob Payne, MD, research and sponsored programs, Children’s Hospitals and Clinics of Minnesota.

CF study #3: Yoga in CF patients

Led by John McNamara, MD, researchers at Children's Hospitals and Clinics of Minnesota determined that yoga has a positive impact on children with CF, primarily by alleviating immediate anxiety.

Background
Previous research revealed that children with CF demonstrated symptoms of depression, sleep difficulties, anxiety and pain. Researchers at Children's set forth to determine if yoga may help alleviate these symptoms using six one-on-one sessions with a certified instructor who customized each class based on a pre-determined selection of yoga postures. A secondary goal of this research was to determine whether the quality of life could be improved with yoga.

Conclusion
The most notable benefit in this study was the improvement of immediate anxiety. Participants expressed feeling more calm and relaxed after yoga. One participant expressed how, when feeling anxious at school, she practiced a breathing technique that she learned from her yoga instructor and found the method to be very helpful.

Team of investigators
Lisa Read, MPH, CCRP
Mahrya Johnson, CCRP
Heidi Vander Velden, MS
Laura Gandrud, MD
John McNamara, MD
M. Thygeson
M. Lui


Evaluating the Effects of Yoga on Children with Cystic Fibrosis: Pain, Sleep, Anxiety and Depression. Pediatric Pulmonology; supplement 34:547. 2011.

Study led by Lisa Read, MPH, CCR • This e-mail address is being protected from spambots. You need JavaScript enabled to view it.

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A study led by Children’s Hospitals and Clinics of Minnesota’s Anupam Kharbanda, MD, shows that children receiving computed tomography (CT) scans often received significant doses of radiation.

Dr. Kharbanda, a pediatric emergency medicine physician at Children’s, was the lead author on “Analysis of Radiation Exposure Among Pediatric Trauma Patients at National Trauma Centers.” The study, which used a database of children receiving treatment for traumatic injuries at trauma centers across the United States, is published in the Journal of Trauma, March 2013.

Background
CT scans have become a mainstay of initial evaluation for both pediatric and adult patients who have experienced trauma – one of the most frequent emergency department complaints.
 
Approaching the issue from the perspective that children are not simply small adults, Dr. Kharbanda and his team sought to investigate the effects of radiation exposure on pediatric patients. Children are more sensitive than adult patients to the effects of ionizing radiation but few studies have described the radiation exposure to pediatric patients during these evaluations.

Read more about the research here »

Anupam Kharbanda, MD, Andrew Flood, career scientist, Karen Blumberg, MD, and Nathan Kreykes, MD, “Analysis of Radiation Exposure Among Pediatric Trauma Patients at National Trauma Centers.” Journal of Trauma. March 2013.


Research Team

Anupam Kharbanda, MD, emergency medicine

Andrew Flood, career scientist

Karen Blumberg, MD, radiology

Nathan Kreykes, MD, surgery



Children’s radiology program fast facts:

• Radiology procedures located at three Children’s locations: Minneapolis, St. Paul and Minnetonka

• 100,000+ radiology procedures performed annually, including Dexa scanning at St. Paul

• Coordinated, pediatric focused care – all in one location – with sedation capabilities when needed

• Adhere to Image Gently guidelines

• All scans read by a Children's pediatric, board-certified radiologist

• Nitrous oxide used when possible to reduce radiation dosages