It is a fundamentally respiratory disorder, rare and genetically heterogeneous, characterized by a chronic disease.
Dr. Wilfredo de Jesús, pediatric pulmonologist
“The accreditation of our Center for Primary Ciliary Dyskinesia (PCD) will help us advance research, promote community participation and improve the diagnosis of patients with PCD not only in Puerto Rico, but also in the rest of the Caribbean as a center referral program for PCD patients,” said Dr. Wilfredo de Jesus Rojas, as director of the institution.
A fact that was applauded by the staff of the Pediatric Institute of Asthma and Lung Diseases in Puerto Rico, the Network of Clinical and Research Centers of the Primary Ciliary Dysquinesia Foundation (PCD), after acknowledging the merits of the specialist to accomplish this task.
In the press release, they also announced the accreditation of the PCD in Puerto Rico, expanding much-needed access to diagnoses and high-quality care for affected families in Puerto Rico and the Caribbean.
The PCD Foundation 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 quality diagnoses and cutting-edge treatment and care, all based on evidence and/or expert consensus.
The PCD Foundation oversees a rigorous application and approval process for participation 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 criteria include, but are not limited to, access to a chemiluminescent nitric oxide analyzer, experienced pulmonologists with PCD training, airway clearance specialists and subspecialty supports, compliance with the PCD Foundation ATS Consensus Statement on the best current methods for diagnosis and treatment. There are more than 40 expert PCD medical centers across the country, with numerous sites awaiting accreditation.
About the PCD Foundation
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 necessary to support increased research, accelerated diagnosis, better health and, ultimately, a cure for PCD.