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| ERA-EDTA President |
Gérard M. London |
Paris, France |
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| Registry Committee |
Carmine Zoccali (Chairman) |
Reggio di Calabria, Italy |
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David Ansell |
| Bristol, United Kingdom |
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Christian Combe |
| Bordeaux, France |
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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, United Kingdom |
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Jane Tizard |
| Bristol, United Kingdom |
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| Enrico Verrina |
| Genoa, Italy |
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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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Ronald Cornet |
| Senior IT Specialist |
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Friedo Dekker |
| Senior Epidemiologist |
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Vianda Stel |
| Epidemiologist |
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| Marlies Noordzij |
| Epidemiologist |
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| Karlijn van Stralen |
| Epidemiologist |
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| Anneke Kramer |
| Medical Information scientist |
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Annick van den Broek |
| Datamanager |
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| Contributions as
of July 1, 2008 |
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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| TO DOWNLOAD AND PRINT THE PDF VERSION OF THIS NEWSLETTER CLICK HERE |
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Note from the Leaving Chairman
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| From Carmine Zoccali, ERA-EDTA Registry Chairman |

Carmine Zoccali |
Six years ago when I was nominated by the Council Chairman of the ERA EDTA Registry, I tried to envisage how I could help the Registry consolidate and grow. My predecessor, Dr. Douglas Briggs, had made a tantalizing effort for bringing back to life the Registry after the 1999 collapse. Thanks to him and Dr. Raymond Krediet arrangements were made for the management of the Registry by a team at the Department of Medical Informatics of the University of Amsterdam. The team was composed by young, motivated, competent epidemiologists and information technology experts and was led by an effective managing director, Dr. Kitty Jager. In 2003 the reborn Registry was a solid federation of registries and the first papers were being published. In this scenario I felt that the best way to help the Registry was to contribute to shape its mission for the challenges that the changing world of nephrology and health care systems in Europe demanded at that time. With some naïveté, I envisaged the activities being extended to the promotion of quality improvement programs, education and special studies in connection with biobanks.
Read more |
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Note from the Incoming Chairman
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From Christoph Wanner, incoming ERA-EDTA Registry Chairman |
Following the World Congress of Nephrology 2009 I have the honor to step in the position of chairman of one of the world most renowned dialysis registries which has a tradition of more than 40 years. As Prof. Carmine Zoccali is moving out he is leaving a bar of success high across the sky of European registries. With Kitty Jager, as the solid centre position and chief officer of the Amsterdam based Registry, I personally feel confident to fulfill the requirements the Society expects from the chairman of its Registry. The support of the Society is substantial for the new tasks being threefold: First, the successful work of the previous chairman and the Amsterdam group seeks continuation. Long-lived programs and a new grant
(the second in row) from the European Community FP7 framework promises high calibre research in upcoming years. Second, we slowly move towards building up a “Low Clearance Clinic Registry” using focused data collection. Third, the Registry will aim to focus on rare diseases dissecting from the database and collecting from the new predialysis Registry. We will not only use our existing data base, but also will embark into prospective data collection of rare events (e.g. pregnancy on dialysis). We also aim to liaise with existing small national registries in the field or rare disorders (e.g. calciphylaxy) and rare diseases (e.g. ciliopathies) with the option to support biobanking. The final aim is to provide a solid database for the best specialists and scientists to exploit the phenotypes with adequate methodology, phenotypes which are meticulous collected by clinicians. The time has come were all contributing clinicians can also participate ad personam et nomen in so-called multi-authorship, registry derived, clinical science research projects. |

Christoph Wanner |
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Last Meeting ERA-EDTA Registry Committee 2006-2009 |
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From left to right: David Ansell, Fernando Garcia Lopez, Vianda Stel, Moniek van de Luijtgaarden, Reinhard Kramar, Kitty Jager, Christoph Wanner, Marlies Noordzij, Torbjorn Leivestad, Alison Macleod, Christian Combe and Karlijn van Stralen. Carmine Zoccali, Enrico Verrina, and Jane Tizard are missing in this picture. |
On March 14 the last meeting of the ERA-EDTA Registry Committee 2006- 2009 took place in Brussels. In addition to our chairman Carmine Zoccali who will be succeeded by Christoph Wanner, the following Registry Committee members have reached the end of their term: Reinhard Kramar (Austria), Torbjorn Leivestad (Norway), Alison MacLeod (UK), Fernando Garcia Lopez (Spain) and Jane Tizard (UK). We thank all of them for their valuable efforts in the past years. To replace the members leaving the Committee, four new members will be elected during the Meeting for national and regional registries on May 22. |
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The 10th Introductory Course on Epidemiology |
From March 14-16, 2009 the 10th regular edition of CME Introductory Course on Epidemiology took place in Brussels, Belgium. Special editions of the course took place in Argentina and Greece. In Brussels, thirty-three participants from 13 European countries attended the three-day course which was hosted by local organizer Frederic Collart. During the course ERA-EDTA Registry committee members and epidemiologists from the ERA-EDTA Registry office in Amsterdam provided an introduction in clinical epidemiology by trying to relate epidemiological theory to examples from nephrology.
The lectures focused on topics such as measuring disease occurrence, study designs, bias and confounding, and survival analysis using Kaplan-Meier and Cox-regression techniques. The knowledge gained from lectures was applied during hands-on-sessions, in which the participants performed statistical analyses themselves using SPSS. Although the course is short it tries to bring across a large quantity of information. Though having already taught more than 300 nephrology researchers the course still seems to fulfil a need. After Brussels another one was given in Mexico-City as a pre-congress course
to the SLANH-Congress. The next courses will be held in Bologna, Italy (October 2009) and Vilamoura, Portugal (February 2010). |
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| ERA-EDTA Registry Activities during the World Congress of Nephrology 2009 in Milan, Italy (May 22-26) |
Friday, May 22 - 9.00 - 12.00 a.m. – Meeting for national and regional registries
Saturday, May 23 – 8.00 - 9.15 a.m. - ERA-EDTA Registry Symposium |
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| Forthcoming issues |
| Newsletter 15, November 2009 |
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