PCD Diagnosis
PCD is a rare disorder; consequently, only a limited number of centers have extensive experience in the diagnosis and management of PCD. Research over the past decade has led to a revolution in diagnostic approaches, including nNO and genetic testing. Nevertheless, many PCD patients are still undiagnosed or misdiagnosed.
PCD Diagnosis: Where Are We Now & Where Are We Going
PCD diagnosis presents a global challenge, made more difficult by differences in health systems, access to expertise and coverage for testing modalities like genetic testing. As a result, diagnostic test availability varies depending on where you live.
PCD Symptoms
It is currently impossible to diagnose all cases of PCD. Available testing options include ciliary biopsy with TEM, nasal nitric oxide measurement, high-speed videomicroscopy, immunofluorescent assay of ciliary proteins, and genetic testing have limitations and do not work in all cases of PCD.
Cystic Fibrosis Research Institute (CFRI): Expanding Awareness of CF Among Underrepresented Groups
The Cystic Fibrosis Research Institute (CFRI) embraces diversity, inclusion, justice, and equity for all community members. Our mission is grounded in principles of openness and respect so as to address the multi-faceted needs of our diverse CF community.
CFRI offers numerous resources to raise awareness of CF’s impact on diverse communities. Printed copies of downloadable fact sheets can be sent at no cost to those who request them. To learn about the impact of cystic fibrosis on people of color, people can watch this video.
CFRI's YouTube Playlist
CFRI has released several videos sharing the experiences of many members of our CF community from underrepresented groups. To watch films on the impact of cystic fibrosis in the African American, Hispanic/Latinx, South Asian, and East Asian communities, go to CFRI’s YouTube playlist.
ATS Patient Information Series
- Twenty Facts About Cystic Fibrosis
- Primary Ciliary Dyskinesia (PCD)
- Managing the ICU Experience: A Proactive Guide for Patients and Families
The ATS Patient Information Series is a public service of the American Thoracic Society and its journal the AJRCCM (www.atsjournals.org). The information appearing in this series is for educational purposes only and should not be used as a substitute for the medical advice of one’s personal health care provider.
