Primary Ciliary Dyskinesia Foundation (PCDF) Registry: A longitudinal study of patients with primary ciliary dyskinesia

Brief description of study

PCD Foundation (PCDF) Registry: A longitudinal study of patients with primary ciliary dyskinesia Establishment of a registry will allow for an improved understanding of demographics, diagnostic testing, and clinical treatment needs of individuals with PCD currently followed at PCD Foundation Clinical and Research Center Network (CRCN) sites in North America. The objective of this proposal is to improve clinical care, quality of life and patient-important outcomes for individuals with primary ciliary dyskinesia (PCD) through establishment of a prospective multi-center registry. Aim 1: To establish a secure electronic repository of clinical information of patients with a confirmed or probable diagnosis of PCD. Aim 2: To systematically collect and evaluate longitudinal demographic information, diagnostic and monitoring test results, and clinical treatments/interventions data with the goal of developing new research questions that will guide improvements in PCD diagnostics, clinical care, quality of life and patient-important outcomes.


Clinical Study Identifier: s21-00809
Principal Investigator: Robert John Giusti.
Other Investigators: Mikhail Kazachkov, Christine Ann Mavaro.


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