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| ERA-EDTA President |
Jorge B. Cannata-Andia |
Oviedo, Spain |
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| Registry Committee |
Carmine Zoccali (Chairman) |
Reggio di Calabria, Italy |
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Giuliano Colasanti |
| Milan, Italy |
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Bert van der Heijden |
| Rotterdam, The Netherlands |
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Reinhard Kramar |
| Wels, Austria |
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Torbjørn Leivestad |
| Oslo, Norway |
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Fernando García López |
| Madrid, Spain |
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Alison MacLeod |
| Aberdeen, Scotland |
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Bénédicte Stengel |
| Villejuif, France |
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Jane Tizard |
| Bristol, United Kingdom |
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Christoph Wanner |
| Würzburg, Germany |
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| Staff |
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Kitty Jager |
| Managing Director |
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Paul van Dijk |
| Medical Information scientist |
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Ronald Cornet |
| Senior IT Specialist |
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Friedo Dekker |
| Senior Epidemiologist |
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Vianda Stel |
| Epidemiologist |
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| Anneke Kramer |
| Medical Information scientist |
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Annick van den Broek |
| Datamanager |
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| Gita Guggenheim |
| Secretary |
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| Contributions as
of July 1, 2006 |
registries
contributing individual patient data to the ERA-EDTA registry
database |
registries
sending selected aggregated data to be included in the annual
report |
no
registry/no contribution/data not eligible for analysis |
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Contact details |
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| Postal address |
| ERA-EDTA Registry |
| Academic Medical Center |
| University of Amsterdam |
| Dept. of Medical Informatics,
J1b-125 |
| P.O.Box 22700 |
| 1100 DE Amsterdam |
| The Netherlands |
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| Visiting address |
| Meibergdreef 9 |
| 1105 AZ Amsterdam |
| The Netherlands |
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| Phone: +31 20 566 7637 |
| Fax: +31 20 691 9840 |
| E-mail: erareg@amc.uva.nl |
| Website: www.era-edta-reg.org |
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Towards Nephro-QUEST |
| From Carmine Zoccali, Chairman of the ERA-EDTA Registry |
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QUEST is a multidimensional initiative conceived to serve the scope of increasing the quality of renal care in Europe. We are striving to focus the attention of renal physicians on the importance of outcome research and epidemiological research in general. The new endeavour of the Registry is to organise two epidemiology courses/year in various European countries. This should be proof of the determination of the ERA-EDTA Registry to create valuable occasions for European nephrologists to be introduced into the fascinating field of epidemiology. For the whole initiative, a fundamental need is the transition of registries towards high quality clinical databases. This is made difficult by the fact that the use of paper collection forms is still diffuse.
Read more |
| Carmine Zoccali |
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| Understanding negative trials in nephrology |
| From Christoph Wanner, member of the ERA-EDTA Registry Committee |
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Observational studies have dominated clinical nephrology for many years like they dominate the literature in general. Even if observational studies are extremely valuable, their main disadvantage is that they may, more than trials, suffer from confounding. The recognition of the rapidly growing number of people with chronic kidney disease (up to 16 % of the US population) leads to the need of evaluating treatment strategies for such disease. In order to overcome the drawbacks of observational studies, during recent years investigators networked successfully (i.e. Collaborative Study Group, GISEN, EUVAS) and produced a number of early randomized controlled trials (RCTs).
Read
more |
| Christoph Wanner |
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Report from the QUEST electronic data extraction group |
From Reinhard Kramar, member of the ERA-EDTA Registry Committee |
Data collection in a uniform way and under standardised conditions is a prerequisite for any solid clinical research. Within the ambitious project of the QUEST initiative the electronic data extraction group assembled 3 times in Toledo, Istanbul and from 11-12 March 2006 in Vienna bringing together representatives from major regional and national registries throughout Europe and experts in the field of communication. The last meeting has seen a major breakthrough. Experts from the ERA-EDTA community, nominated by national societies and many of them co-authors of the current European best practice guidelines have been asked to derive variables (biometric, clinical and laboratory values) that could be seen as core clinical performance indicators (CPI).
Read
more |
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| Members of the QUEST electronic data extraction group |
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| A message of thanks to everyone who contributed to the ERA-EDTA Mini Questionnaire, a cohort study to predict survival on RRT |
From Keith Simpson, Study Coordinator |
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An accurate prediction of survival is extremely useful when helping patients to understand the likely benefits of RRT, but in the mid nineteen nineties published prediction models showed low predictive accuracy. By starting this study we have attempted to over come limitations in previous studies by comparing the results of conventional and novel statistical modelling techniques. All participating renal centres in the ERA EDTA region were invited to join this registry project. The lack of a reliable historic “European” database for this effort was countered by using a mini questionnaire to identify a cohort of patients who died in the months of February 1997 or 1998 and another who started RRT during the same periods.
Read
more |
| Keith Simpson |
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Confounding Bias |
| From Kitty Jager, Managing Director of the ERA-EDTA Registry |

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In many papers that describe the analysis of patient outcomes the authors make use of statistical models which ‘adjust’ for confounding variables. In this note we will explain in short what confounding is and how we may address it. Confounding can be described as a “mixing of effects”. This may occur if we study the relationship between an exposure E and a disease D (Figure 1) which might be confounded by a factor C.
Read more |
| Kitty Jager |
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| Registry activities during the XLIII ERA-EDTA Congress in Glasgow (July 15-18, 2006) |
16 July - ERA-EDTA Registry Symposium. Hall 1. 10.30 to 11.30 a.m.
17 July - Hands-on Course - Clinical Epidemiology. Hall Forth. 10.30 to 12.00 a.m.
More information available at www.eraedta2006.org |
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| Forthcoming issues |
| Newsletter 10, October 2006 |
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