Since the beginning of maintenance therapy for endstage renal disease (ESRD) through dialysis or transplantation, the number of patients treated for terminal kidney failure worldwide has continued to grow at a rate that is far in excess of the growth rate of the general population. By 2001, more than 1 million patients were reported worldwide to receive dialysis treatment alone, with the numbers growing at an annual global average rate of 7% [1,2]. The main factors contributing to the continued growth are the universal ageing of populations, multi-morbidity, higher life-expectancy of treated ESRD patients and increasing access of a generally younger patient population to treatment in countries in which access had previously been limited [3–6]. Solutions targeting the prevention or reversal of renal disease receive widespread attention, but have as yet failed to significantly change the development of global patient numbers. A superior and financially viable alternative to dialysis or allograft transplantation for chronic renal failure is not foreseen for the near or even mid-term future [6–9]. In order to facilitate effective future planning by healthcare authorities, reliable and up-to-date information on ESRD patient numbers, development trends, treatment modalities and treatment outcomes are indispensable. An increasing number of national and international renal registries have provided valuable demographic and epidemiologic information on renal patients since the first report of the European Dialysis and Transplant Association (EDTA) was published in 1965 [6,10–17]. These reports provide a base for comparison between specified patient populations and an understanding of treatment practices and policies and their implications for the well-being of those undergoing treatment for ESRD. The conclusions that can be drawn from such considerations provide knowledge of value to both medical communities and policy makers throughout the world. Even at a national level, data collection and analysis requires extensive resources to enable fast and reliable reporting of the most recent numbers. The collection of records reflecting the situation in a large group of countries presents additional challenges that render timely reporting a difficult target to achieve. A multicountry European database is organized by the ERA/ EDTA, and now consolidates renal replacement information from different renal registries collecting patient data of 27 countries [16]. An alternative approach to reporting international ESRD-relevant data is pursued in the Dialysis Outcomes and Practice Patterns Study (DOPPS). This was initiated in 2002 as an observational study and presently collects information on haemodialysis (HD) practice patterns and their associated outcomes from 12 countries in Europe, North America and Asia [15]. Fresenius Medical Care, the largest dialysis care company worldwide, follows two different and separate approaches, one addressing practice patterns and outcomes in its clinics (e.g. the European Clinical Database, EuClid), and the other using its extensive international network for retrieving and comparing reliable and contemporary ESRD demographic information from 122 countries [2,18]. This article supplies an extract of the latter for use and reference by renal care specialists and healthcare administrative bodies. In addition, trends observed in association with patient demographic data are specified and discussed.

ESRD patients in 2004: global overview of patient numbers, treatment modalities and associated trends.

Improving quality of care. A systematic review on how medical registries provide information feedback to health care providers.

http://www.thaihypertension.org/files/////109.Effect%20Telmisartan%20add%20ACEI%20chronic%20heart%20failure%20-%20JACC%202010.pdf

Effects of Telmisartan Added to Angiotensin-Converting Enzyme Inhibitors on Mortality and Morbidity in Hemodialysis Patients With Chronic Heart Failure : A Double-Blind, Placebo-Controlled Trial

Mortality risk for patients receiving hemodiafiltration versus hemodialysis

An international observational study suggests that artificial intelligence for clinical decision support optimizes anemia management in hemodialysis patients

Quality and variability of dialysis practice are generally gaining more and more importance. Fresenius Medical Care (FMC), as provider of dialysis, has the duty to continuously monitor and guarantee the quality of care delivered to patients treated in its European dialysis units. Accordingly, a new clinical database called EuCliD has been developed. It is a multilingual and fully codified database, using as far as possible international standard coding tables. EuCliD collects and handles sensitive medical patient data, fully assuring confidentiality. The Infrastructure: a Domino server is installed in each country connected to EuCliD. All the centres belonging to a country are connected via modem to the country server. All the Domino Servers are connected via Wide Area Network to the Head Quarter Server in Bad Homburg (Germany). Inside each country server only anonymous data related to that particular country are available. The only place where all the anonymous data are available is the Head Quarter Server. The data collection is strongly supported in each country by "key-persons" with solid relationships to their respective national dialysis units. The quality of the data in EuCliD is ensured at different levels. At the end of January 2001, more than 11,000 patients treated in 135 centres located in 7 countries are already included in the system. FMC has put the patient care at the centre of its activities for many years and now is able to provide transparency to the community (Authorities, Nephrologists, Patients.....) thus demonstrating the quality of the service.

EuCliD (European Clinical Database): a database comparing different realities.

The European Clinical Database EuCliD/spl reg/ has been developed as a tool for supervising selected quality indicators of about 200 European dialysis centres. EuCliD/spl reg/ is a Lotus Notes/spl reg/ based database currently containing medical data of more than 22,000 dialysis patients from 220 dialysis centres in 10 European countries. Data evaluation is performed with statistical tools like SPSS. EuCliD/spl reg/ is used as a part of the Quality Management System of Fresenius Medical Care (FMC) and its Continuous Quality Improvement (CQI) program. Each participating dialysis centre receives benchmarking reports in regular intervals (currently every half year). The benchmark for all quality parameters is the weighted mean of the corresponding data of all centres. Quality parameters are selected according to the "Quality Pyramid" and the European Best Practice Guidelines (EBPG) or other accepted guidelines (for instance DOQI). An obvious impact of our work on the quality of the treatments could be observed. This concerns important outcome predictors like K*t/V and haemoglobin concentration as well as the outcome itself expressed in survival rates.

Survey of medical data from data acquisition to high quality patient treatment

Objectives: The European Clinical Database EuCliD ® * has been developed as a tool for supervising selected quality indicators of about 200 European dialysis centers. Major efforts had to be made to comply with local and European laws regarding data security. Method: EuCliD ® is a Lotus Notes ® based flat-file database currently containing medical data of more than 14,000 dialysis patients from 10 European countries. Another 15,000 patients from 150 centers in 4 South-American countries will be added soon. Data are entered either manually or by means of interfaces to existing local data managing systems. This information is transferred to a central Lotus Notes Server. Data evaluation was performed with statistical tools like SPSS. Results: EuCliD ® is used as a part of the CQI (Continuous Quality Improvement) management system of Fresenius Medical Care (FMC) dialysis units. Each participating dialysis center receives (currently every half year) benchmarking reports at a regular interval. The benchmark for all quality parameters is the weighted mean of the corresponding data of all centers. Conclusions: An obvious impact of data sampling and data evaluation on the quality of the treatments could be observed within the first one and a half years of working with EuCliD ® . This also concerns important outcome predictors like Kt/V and hemoglobin concentration as the outcome itself expressed in hospitalization days and survival rates. With the help of EuCliD ® the user is able to sample clinical data, identify problems, search for solutions with the aim of improving the dialysis treatment quality and guarantee a high-class treatment quality for all patients.

EuCliD® – A Medical Registry

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EuCliD (European Clinical Database): a database comparing different realities.

Survey of medical data from data acquisition to high quality patient treatment

EuCliD® – A Medical Registry