Primary Ciliary Dyskinesia Center

About the Primary Ciliary Dyskinesia Center

The Primary Ciliary Dyskinesia (PCD) Center is one of several specialized centers within the Division of Pulmonary Medicine at The Children’s Hospital of Philadelphia. The PCD Center provides comprehensive treatment and follow-up care for children with primary ciliary dyskinesia, a rare disease that damages the microscopic hair-like structures (cilia) needed to clear the airways.

PCD is characterized by recurrent respiratory infections and/or pneumonias. Patients usually have recurrent or persistent sinus problems as well as ear infections, and 50 percent of patients have cardiac situs inversus (heart appears in the right side of the chest instead of the left).

Our aim

PCD is a rare disorder with significant disruption of quality of life and sometimes life-threatening complications. Our clinical center is dedicated to the care of patients with PCD, and aims to provide high-quality, evidence-based treatment to this often overlooked patient population. In addition, we are committed to expanding existing knowledge through research and collaboration in order to improve the future care of PCD patients.

We are part of the PCD Clinical and Research Centers Network (CRCN), a national collaborative network of centers committed to advancing knowledge of this disease through clinical research, setting standards of treatment and improving outcomes for patients with PCD.

Our approach 

As the presenting symptoms of PCD can mimic more common and less serious disorders, an accurate diagnosis is critical. It is very important to undergo definitive diagnostic testing when PCD is suspected. The breadth and depth of our clinical team's experience treating patients with PCD, as well as the availability of state-of-the-art technologies at CHOP are integral in confirming the diagnosis of PCD and establishing the best course of treatment.

Given the current absence of standardized treatments for primary ciliary dyskinesia, we focus on the individual needs of each patient and family while operating under the guidance of available research and expert practice guidelines.

Continuity of care, a holistic team model and a multidisciplinary approach to management of PCD are the foundations of our Center’s services.

Appointments

If you are a patient or parent considering a primary ciliary dyskinesia evaluation by our Center, please contact the Division of Pulmonary Medicine at 215-590-3749, or Tara Chestnut, office coordinator, directly at 267-426-0664.

To help us schedule your evaluation as soon as possible, please be prepared to answer the following questions:

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For more information about what to expect and how to prepare for your first visit to The Children's Hospital of Philadelphia, visit our Resources for Families section »

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No. 1 in Pulmonology

Pulmonology at CHOP was ranked best in the nation, according to U.S.News & World Reports 2013-14 survey of Best Children’s Hospitals. Learn more »

The Children’s Hospital of Philadelphia was ranked best in the nation, according to Parents magazine’s 2013 report of Best Children’s Hospitals. Pulmonology at CHOP was spotlighted in the rankings. Learn more »