Update in WP2
International Registry for Primary Ciliary Dyskinesia nearing completion (Progress in Work Package 2)
The aim of Bestcilia Work Package 2 is the establishment of an international registry of PCD patients to allow systematic collection of data on incidence, diagnostics and general treatment trends for the disease. That aim has been largely realized in the course of the recent months.
Current activities in WP2 include recruitment of patients as well as a sideline task of establishing new centers for data collection. Theregistry is now up and running, actively recruiting patients. As many as 69 patients are already on board. Moreover, four centers are working on entering data into the registry and six additional centers are in the process of obtaining ethical approval to participate. To facilitate data entry, it is now possible to import data from other sources (e.g. EXCEL documents), provided that all data are anonymized, as part of an obligatory quality control process. A first provisional data analysis is in preparation.
The WP2 team is also drawing up a manuscript with the intent of raising the general awareness. Further activities include introducing technical improvements to the registry, e.g. implementing self-generated output sheets of individual center data to provide all centers with direct feedback.
The registry is accessible online under under www.pcdregistry.eu.