Update in Work Package 3
The primary aim of Work Package 3 is establishing standardized PCD diagnostic testing in three European countries with limited health expenditures. Since the launch of the BESTCILIA project, WP3 participants have worked hard to successfully develop standardised operational procedures (SOPs) for the diagnostic algorithm for PCD. Scientific personnel from three new PCD centres at the periphery of Europe (Cyprus, Poland and Greece) have been trained and are now implementing these procedures in their countries. Recruitment campaign for PCD has now reached its midpoint.
(Progress in Work Package 3)
State-of-the-art equipment for performance of diagnostic tests in each country has already been acquired and set up in a uniform manner and PCD referrals were recruited since January 2014. Additionally, a detailed data acquisition form has been developed by WP3 participants and was circulated to the three participating study centers (CUT, IIMCB, UOA) for a comprehensive assessment of each PCD referral at the time of presentation.
The three participating centres organized recruitments campaigns in each of the three countries. The campaigns made use of lectures, flyers and letters addressed both to attending physicians and the lay public. The campaigns aimed to detect new suspect PCD patients and refer them for diagnostic testing under the newly established SOPs and re-evaluate individuals that were characterized as ambiguous PCD patients prior to the lunch of WP3.
Up to February 2015, a total of 139 new suspect PCD referrals have been investigated with the WP3-developed SOPs. In addition, a total of 18 previously known ambiguous PCD cases were also recruited and retested. Furthermore, 73 previously known PCD patients that missed at least one of the three basic diagnostic tests (nNO, HSVM, TEM) prior to the lunch of the recruitment campaign, had the missing tests completed according to WP3-developed SOPs. Within one year from the launch of the recruitment campaign, a total of 23 new PCD patients have been diagnosed.
Finally, regarding cases with inconclusive diagnostic tests, an internet sharing platform was used so that reviewers could evaluate and comment on the suspect patients’ diagnostic files and clinical findings. To achieve this objective, a comprehensive, anonymized database with basic clinical and diagnostic information for each PCD referral was developed and made available for the reviewers.