CHOC Acknowledge for Expertise in Treatment, Care of Primary Ciliary Dyskinesia

Children’s Hospital of Orange County is pleased to have joined the PCD Foundation Clinical and Research Centers Network (PCDF-CRCN), making it the first and only organization in Southern California to earn the accreditation after demonstrating expertise in the diagnosis and care of primary ciliary dyskinesia (PCD).

With this official accreditation, CHOC joins a select group of top North American centers caring for patients with PCD, a rare inherited disorder that affects the cilia – tiny, hair-like structures that line the body’s airways to help move out bacteria. Malfunctioning cilia can cause breathing problems, hearing loss, infections and other disorders. An early diagnosis and treatment for PCD is critical for children to ensure the highest quality of life and long-term outcomes.

With this accreditation, families can feel doubly sure that they are receiving care from experts who are committed to providing cutting edge diagnosis and treatment for PCD, and who are dedicated to improving quality through research initiatives. Committed to patient- and family-centered care, CHOC’s PCD clinic is a multidisciplinary collaboration between pulmonologists, geneticists, otolaryngologists and other ancillary specialists such as case managers, respiratory and physical therapists, social workers, nutritionists and genetic counselors. This full expertise is embedded into every patient’s visit to the PCD clinic at CHOC.

“We are thrilled to join PCDF-CRCN, and see this distinction as further validation of our commitment to providing the highest quality of care to our patients with PCD,” says Dr. Chana Chin, a pediatric pulmonologist and director of the CHOC PCD clinic. “Our collaboration with the network will lead to enhanced patient care and outcomes  as well as the support of a community of leading international researchers.”

To join PCDF-CRCN, CHOC participated in a rigorous application and approval process for participation in the centers network. PCDF staff and PCD clinical experts reviewed the clinic to ensure standard protocols for diagnosis were in place, as well as a positive patient experience.

Center criteria includes, but is not limited to, access to chemiluminescence nitric oxide analyzer; experienced pulmonologists with training in PCD; airway clearance specialists and subspecialty supports; and adherence to PCD Foundation ATS Consensus Statement on current best methods for diagnosis and treatment.

The PCD Foundation was founded by a PCD parent and a PCD patient in 2002. As a patient-focused organization, the goal of the PCD Foundation is to provide the leadership and resources needed to support increased research, accelerated diagnosis, improved health and ultimately, a cure for PCD.