Background. In June 2000 a new ERA–EDTA Registry Office was opened in Amsterdam. This Registry will only collect core data on renal replacement therapy (RRT) through national and regional registries. This paper reports the technical and epidemiological results of a pilot study combining the data from six registries. Methods. Data from the national renal registries of Austria, Finland, French‐Belgium, The Netherlands, Norway, and Scotland were combined. Patients starting RRT between 1980 and 1999 (n=57371) were included in the analyses. Cox proportional hazards regression was used to predict survival. Results. The use of different coding systems for ESRD treatment by the registries made it difficult to merge the data. Incidence and prevalence of RRT showed a continuous increase with a marked variation in rates between countries. The 2‐, 5‐ and 10‐year patient survival was 67, 35 and 11% in dialysis patients and 90, 81 and 64% after a first renal allograft. Multivariate analysis showed a slightly better survival on dialysis in the 1990–1994 (RR 0.94, 95% CI 0.90–0.98) and the 1995–1999 cohort (RR 0.88, 95% CI 0.84–0.92) compared to the 1980–1984 cohort. In contrast, there was a much greater improvement in transplant‐patient survival, resulting in a 56% reduction in the risk of death within the 1995–1999 cohort (RR 0.44, 95% CI 0.39–0.50) compared to the 1980–1984 cohort. Conclusions. This study provides support for the feasibility of a ‘new style’ ERA–EDTA registry and the collection of data is now being extended to other countries. The improvement in patient survival over the last two decades has been much greater in transplant recipients than in dialysis patients.

Over a period of 40 years, SNOMED has developed from a pathology-specific nomenclature (SNOP) into a logic-based health care terminology. In spite of its long existence and continuous evolvement, it is yet unknown to what extent SNOMED is used in clinical practice, and what benefits were achieved. The aim of this paper is to investigate this by providing an overview of published studies in which a version of SNOMED was studied or applied.

Objective: To discuss recent developments in clinical terminologies. SNOMED CT (Systematized Nomenclature of Medicine Clinical Terms) is the world's largest clinical terminology, developed by an international consortium. LOINC (Logical Observation Identifiers, Names, and Codes) is an international terminology widely used for clinical and laboratory observations. RxNorm is the standard drug terminology in the U.S. Methods and results: We present a brief review of the history, current state, and future development of SNOMED CT, LOINC and RxNorm. We also analyze their similarities and differences, and outline areas for greater interoperability among them. Conclusions: With different starting points, representation formalisms, funding sources, and evolutionary paths, SNOMED CT, LOINC, and RxNorm have evolved over the past few decades into three major clinical terminologies supporting key use cases in clinical practice. Despite their differences, partnerships have been created among their development teams to facilitate interoperability and minimize duplication of effort.

Rare diseases (RD) patient registries are powerful instruments that help develop clinical research, facilitate the planning of appropriate clinical trials, improve patient care, and support healthcare management. They constitute a key information system that supports the activities of European Reference Networks (ERNs) on rare diseases. A rapid proliferation of RD registries has occurred during the last years and there is a need to develop guidance for the minimum requirements, recommendations and standards necessary to maintain a high-quality registry. In response to these heterogeneities, in the framework of RD-Connect, a European platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research, we report on a list of recommendations, developed by a group of experts, including members of patient organizations, to be used as a framework for improving the quality of RD registries. This list includes aspects of governance, Findable, Accessible, Interoperable and Reusable (FAIR) data and information, infrastructure, documentation, training, and quality audit. The list is intended to be used by established as well as new RD registries. Further work includes the development of a toolkit to enable continuous assessment and improvement of their organizational and data quality.

Objective The aim of this paper is to report on the use of the systematised nomenclature of medicine clinical terms (SNOMED CT) by providing an overv

In this paper we study the diagnosis and repair of incoherent terminologies. We define a number of new nonstandard reasoning services to explain incoherence through pinpointing, and we present algorithms for all of these services. For one of the core tasks of debugging, the calculation of minimal unsatisfiability preserving subterminologies, we developed two different algorithms, one implementing a bottom-up approach using support of an external description logic reasoner, the other implementing a specialized tableau-based calculus. Both algorithms have been prototypically implemented. We study the effectiveness of our algorithms in two ways: we present a realistic case study where we diagnose a terminology used in a practical application, and we perform controlled benchmark experiments to get a better understanding of the computational properties of our algorithms in particular and the debugging problem in general.