It is essentially a respiratory disorder, rare and genetically heterogeneous, characterized by chronic disease.
Dr. Wilfredo de Jesus, Pediatric Pulmonologist
“The accreditation of our center for primary ciliary dyskinesia (PCD) will help us advance research, enhance community participation, and improve the prognosis of PCD patients not only in Puerto Rico, but also in the rest of the Caribbean as a referral program center for PCD patients,” he said. Dr.. Wilfredo de Jesus Rojas as director of the institution.
A fact welcomed by the staff of the Pediatric Institute of Asthma and Lung Diseases of Puerto Rico, and the network of Clinical and Research Centers of the Primary Ciliary Dyskinesia (PCD) Foundation, after recognizing the benefits of specialized to accomplish this task.
In the press release, they also announced the adoption of PCD in Puerto Rico, expanding much-needed access to high-quality diagnosis and care for affected families in Puerto Rico and the Caribbean.
The PCD Foundation has developed the PCD Foundation Clinical and Research Centers Network (PCDF – CRCN) to serve as focal points for PCD diagnosis, research, treatment, and data collection. This network ensures that patients with PCD receive high-quality diagnoses, advanced treatment and care, all based on evidence and/or expert consensus.
PCD Foundation oversees the rigorous application and approval process to participate in the network of centers. PCDF staff and PCD clinical experts visit each center to ensure that standard protocols for diagnosis are in place and that the patient experience at each center is positive.
Center standards include, but are not limited to, access to a chemical nitric oxide analyzer, experienced pulmonologists with PCD training, airway cleansing and subspecialty support specialists, and compliance with the PCD ATS Foundation Consensus Statement on current best approaches to diagnosis and treatment. There are more than 40 medical centers that specialize in PCD around the country, with many more locations awaiting accreditation.
The PCD Foundation was founded by a PCD parent and a PCD patient in 2002. As a patient-centered organization, the goal of the PCD Foundation is to provide leadership and resources to support increased research, rapid diagnosis, health improvement, and, ultimately, the treatment of PCD.