Cystic Fibrosis Center Offers Leading-Edge Multidisciplinary Care

For the second year running, the Cystic Fibrosis (CF) Center team at Lehigh Valley Reilly Children's Hospital has received the Outstanding Care Center Partnership Award. Bestowed by the CF Foundation Delaware Valley Chapter, the award recognizes the strong collaborative relationship between the CF Center’s team and the foundation’s local chapter. 

On a national level, the CF Foundation plays a central role in advancing high-quality, evidence-based care. The CF Center at Lehigh Valley Reilly Children’s Hospital is the only site in the region – and one of about 130 nationwide – accredited as a core center by the CF Foundation. It provides state-of-the-art care for young people with CF, from infancy through adolescence.

“We develop an individualized treatment plan for every patient based on the guidelines of the CF Foundation, which are backed by high-quality research. The care that a child with CF receives at our center is equivalent to what they would get at a world-renowned hospital,” says Jennifer Logan, MD, a pediatric pulmonologist who became the CF Center director in July.

The CF Center provides the latest treatment options for this complex genetic disorder. One such option is highly effective modulator therapy (HEMT) – medications that target the defective protein underlying the CF disease process. Coupled with newborn screening, HEMT has dramatically improved the outlook for young people diagnosed with CF.

“When I was doing my fellowship during the early 1980s, the median life expectancy for a child with CF was 16 years,” says pediatric pulmonologist Robert Miller, MD, longtime former director of the CF Center. “The current median life expectancy is 56 years and rising.”

Every child’s situation is unique. Some youngsters with CF do not benefit from HEMT or are not identified until later in childhood. The CF Center offers a full array of services to manage any treatment challenges and treat potential complications of the disorder.

“Our multidisciplinary team makes sure that all our patients’ needs are addressed,” Dr. Logan says. “Every team member provides essential services and is available for every visit for each patient.”

Along with fellowship-trained pediatric pulmonologists, the CF Center team includes a:

• CF Center Nurse Coordinator
• Respiratory therapist
• Registered dietitian
• Social worker
• Physical therapist
• Behavioral therapist
• Nurse

Children and their families are key players as well. The CF Center has a Parent Advisory Council to support parents of newly diagnosed children and promote family involvement.

“With CF, it’s especially important for parents to help lead the care,” Dr. Logan says.