0000000000866678
AUTHOR
Martin Lablans
An international registry for primary ciliary dyskinesia
Primary ciliary dyskinesia (PCD) is a rare autosomal recessive disorder leading to chronic upper and lower airway disease. Fundamental data on epidemiology, clinical presentation, course and treatment strategies are lacking in PCD. We have established an international PCD registry to realise an unmet need for an international platform to systematically collect data on incidence, clinical presentation, treatment and disease course.The registry was launched in January 2014. We used internet technology to ensure easy online access using a web browser under www.pcdregistry.eu. Data from 201 patients have been collected so far. The database is comprised of a basic data form including demographic…
MAGICPL: A Generic Process Description Language for Distributed Pseudonymization Scenarios
Abstract Objectives Pseudonymization is an important aspect of projects dealing with sensitive patient data. Most projects build their own specialized, hard-coded, solutions. However, these overlap in many aspects of their functionality. As any re-implementation binds resources, we would like to propose a solution that facilitates and encourages the reuse of existing components. Methods We analyzed already-established data protection concepts to gain an insight into their common features and the ways in which their components were linked together. We found that we could represent these pseudonymization processes with a simple descriptive language, which we have called MAGICPL, plus a relati…
Ten years' experience with an external quality control program for semen analysis
To gauge the performance of laboratories and impact of the German semen analysis external quality control program (QuaDeGA) over its first 10 years.Retrospective analysis of QuaDeGA's twice yearly distribution of fixed semen samples and electronic material documenting sperm motility. Ranking of each participant's responses was determined according to their relation to a "target window."Multicenter. PAITENT(S): Healthy donors.None.Laboratory performance, World Health Organization (WHO) adherence.Over 19 runs, there was a steady increase of participants (280 laboratories), the largest group being private urologic practices. Although use of WHO-recommended Neubauer chamber (from 33% to 55%) an…