An Open-Source Software Tool to Facilitate Data Protection Impact Assessments

In the realm of medical research, preserving patient privacy while facilitating effective research and collaborations poses a significant challenge. Data protection impact assessments (DPIAs) and associated methodologies have emerged as a response to this dual imperative. DPIAs necessitate expertise across diverse domains, resulting in a complex procedural landscape. To address this, we present “DPIA click&go”, a user-friendly tool designed to streamline the DPIA process in a plug-and-play manner. This tool enables users to semi-automatically select risks from predefined categories, construct evaluation matrices, access risk-mitigating measures, and re-evaluate risks after the application of mitigation strategies. Tailoring risks and measures to each institute’s needs is essential, facilitated by the provided data model, considerably simplifying DPIA creation at an institutional level. The efficacy of the DPIA click&go tool was validated with a real-world project, comparing its performance with a manually created DPIA in terms of risk coverage and mitigation strategies. The promising outcomes of this tool underscore its potential within the national data protection landscape, suggesting its possible foundational role in harmonizing data protection practices at a larger, potentially, European or global, scale

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 and diagnostic information, and visit forms designed to monitor the disease course. To establish a definite PCD diagnosis, we used strict diagnostic criteria, which required two to three diagnostic methods in addition to classical clinical symptoms. Preliminary analysis of lung function data demonstrated a mean annual decline of percentage predicted forced expiratory volume in 1 s of 0.59% (95% CI 0.98-0.22). Here, we present the development of an international PCD registry as a new promising tool to advance the understanding of this rare disorder, to recruit candidates for research studies and ultimately to improve PCD care