About Us

The Pediatric Cystic Fibrosis Center is a past recipient of the annual Cystic Fibrosis Foundation’s Quality Care Award: Recognizing Outstanding QI Processes and Accomplishments.

Patients with cystic fibrosis under 21 years of age receive their routine care at St. Louis Children’s Hospital, which are regularly scheduled in the pediatric ambulatory clinics. Children colonized with Burkholderia cepacia complex are seen at alternate times according to CFF infection control guidelines.  Individual physicians, who have primary responsibility for their patients, attend the clinic with the support of two cystic fibrosis nurse coordinators, dietitians, clinical social workers and physical therapist. When necessary, children with cystic fibrosis are admitted to the St. Louis Children’s Hospital 7100 Respiratory Unit, a 16-bed, state-of-the-art pediatric ward, under the care of pediatric residents and pulmonary fellows with attending supervision from the Division of Pediatric Allergy and Pulmonary Medicine. Patients colonized with Burkholderia species are housed on a separate pediatric ward.

Our team meets regularly to review ambulatory and inpatient care, other patient-related issues, research projects and quality improvement initiatives. The adult and pediatric center directors meet frequently to critically review the programs and ongoing clinical research projects, and the entire adult and pediatric teams convene regularly.  Cystic fibrosis patients admitted to St. Louis Children’s Hospital are also reviewed with the other members of the division (including physicians, nurses, respiratory therapists, dietitians and physical therapists) during a weekly patient care conference. The pediatric lung transplantation team has regular meetings among their team to discuss patient care issues; as many of these patients have cystic fibrosis, the transplant and CF teams also meet regularly to review common patients.

As the child approaches 18 years of age, the patient and families begin the process of transitioning care to the Adult Cystic Fibrosis Center. With rare exception, all patients are transferred by age 21 years.

Community outreach

The Pediatric Cystic Fibrosis Centers supports several community activities, including a Cystic Fibrosis Parent Networking Group and Cystic Fibrosis Parents Night Out. The center has an active Parent Advisory Committee that continues to meet to provide input regarding quality improvement initiatives. We have created a social network for our cystic fibrosis families using Facebook, which brings patients and staff closer together. In addition, members of our Center care team collaborate with the local Gateway Chapter of the Cystic Fibrosis Foundation, as well as the CF Foundation’s national office and programs.

Clinical trials

The Washington University Therapeutic Development Center (TDC) is devoted to improving the health and well-being of patients with cystic fibrosis, whether it involves conventional treatments, novel therapies and pharmaceuticals or organ transplantation. Clinical research in cystic fibrosis at the Washington University School of Medicine has expanded, and includes TDN-supported clinical trials testing novel agents to correct or potentiate specific cystic fibrosis transmembrane conductance regulator (CFTR) defects, as well as novel approaches to treatment of pulmonary infections. Members of the center have actively been involved in a number of TDN-based committees, including the steering, protocol review and patient advocacy/ethics committees.

Our center also supports clinical research initiated by center members and collaborators. Topics addressed in these efforts include gastrointestinal complications of CF, CF related diabetes and hearing loss after aminoglycoside therapy in CF.