ERS Journal article on PCD registry
ERS Journal on Bestcilia’s contribution to international PCD registry
The European Respiratory Journal (ERS) has recently released a noteworthy article describing the development of the registry of PCD patients, created within the Bestcilia project. The registry is an international online platform, aimed at systematic collection of data on the progression, clinical presentation and treatment of PCD.
Despite the notable progress in PCD-related research and the deep insight gained in recent years, PCD remains a challenge from the point of view of diagnostics and constructing standardized treatment regimens. In such cases, patient registries are effective tools for gathering and ordering data from a sizeable patient cohort. One of important goals of Bestcilia was the establishment of such a registry for PCD and the recent article in ERS Journal describes this process. Thanks to the close cooperation of Bestcilia participants with several patient organizations and leading clinicians in the field, it was possible to attract several referral centers which enter the data for diagnosed PCD patients.
The patient entry in the database is comprised of a basic form with diagnostic and demographic information; subsequent forms are designed to allow the researchers and clinicians to track the course of the disease. Launched in January 2014, the PCD registry has already recruited as many as 201 patients. Further plans of thePCD scientific community will focus on recruiting more referral centers, cleaning the data pool and disseminating awareness of this new and promising tool.
The full article in ERS Journal is available here.