Swiss Registry for Tracking Diagnosis and Treatment of Primary Ciliary Dyskinesia and Kartagener Syndrome

What this Trial Is About

Researchers are conducting the Swiss Primary Ciliary Dyskinesia PCD Registry to collect detailed information about patients diagnosed with PCD in Switzerland. This registry gathers data on diagnosis, symptoms, treatments, and follow-up care to support national and international research and monitoring efforts. It started in 2013 as a pilot and expanded to cover the entire country, contributing to international collaborations such as the iPCD cohort. The registry collects retrospective data from birth at the time of inclusion and then follows patients prospectively throughout their lives. It gathers demographic details, diagnostic test results, clinical manifestations, lung function, microbiology, imaging, lab tests, treatments including surgery and physiotherapy, hospitalizations, and patient-reported symptoms and lifestyle behaviors through questionnaires. Data are collected regularly using a secure web-based platform called REDCap. Participants provide consent to join the registry, allowing researchers to track their health information over time. Data collection occurs at baseline and at regular intervals, including measurements of height, BMI, lung function, nasal nitric oxide, cilia structure and function, respiratory microbiology and antibiotic resistance, chest and sinus CT scans, vital status, and clinical symptom frequency. This comprehensive monitoring helps build a better understanding of PCD disease progression and outcomes.

Swiss Primary Ciliary Dyskinesia Registry