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New Primary Ciliary Dyskinesia Center at UH Rainbow Babies & Children’s Hospital first in U.S. fully accredited by PCD Foundation

Monday, December 14, 2015

Pulmonologists estimate as many as 20,000 people in the U.S. have PCD

CLEVELAND, Ohio – University Hospitals Rainbow Babies & Children’s Hospital’s (UH Rainbow) new Primary Ciliary Dyskinesia Center is the first in the U.S. to be site-visited and fully accredited by the Primary Ciliary Dyskinesia (PCD) Foundation. It is estimated as many as 20,000 Americans have PCD but fewer than 1,000 have received a definitive diagnosis.

PCD is a genetic disorder of the function of cilia—tiny, microscopic moving structures that line the airways, ears and sinuses. The sweeping, wave-like motion of cilia is important for keeping these areas clean and free from infection. Without properly functioning cilia, people with PCD are unable to protect their respiratory system. Frequent infections of the lungs, ears and sinuses are common and can lead to serious and permanent damage.

“Proper diagnosis of PCD remains a challenge,” says Benjamin Gaston, MD, Chief, Pediatric Pulmonology and Director of the new PCD Center at UH Rainbow. “About 70 percent of PCD patients have a positive genetic test, and that number is getting higher every year. But to make a valid diagnosis requires considering several different factors and tests that can easily be misinterpreted.”

To provide for increased and more reliable diagnosis of PCD, the PCD Foundation has launched a network of approved clinical and research centers across the U.S. UH Rainbow’s PCD Center is the first clinical center to earn the PCD Foundation endorsement and the only approved PCD Center in Ohio.

“You need to have an entire team of people dedicated to PCD, including a dedicated nurse,” says Dr. Gaston, who is also Professor of Pediatrics at Case Western Reserve University School of Medicine. “You need the technology to do nasal nitric oxide testing properly and be within a children’s medical center with an integrated, multidisciplinary team. We’re very pleased our center meets these criteria and has been approved by the PCD Foundation.”

The PCD Foundation is currently the only organization focused on this group of disorders in the U.S. The foundation’s mission is to provide the leadership and resources needed to support increased research, accelerated diagnosis, improved health and ultimately, a cure.

Dr. Gaston says he hopes the new Rainbow center will improve diagnosis and treatment for people with PCD. He encourages patients to the new center who have at least two of the following four characteristics:

  • Heterotaxy/organ(s) backwards or partly backwards
  • Newborn respiratory distress requiring oxygen in a term infant with no other underlying disease
  • Chronic nasal congestion beginning in the first year of life
  • Chronic cough beginning in the first year of life

Additionally, children and adults with a diagnosis of bronchiectasis should be evaluated using the PCD center’s nasal nitric oxide test if no definite cause for the bronchiectasis has been identified.

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