 |
| ERA-EDTA President |
Francesco Locatelli |
Lecco, Italy |
| Registry Committee |
Carmine Zoccali (Chairman) |
Reggio di Calabria, Italy |
Giuliano Colasanti |
| Milan, Italy |
Bert van der Heijden |
| Rotterdam, The Netherlands |
Reinhard Kramar |
| Wels, Austria |
Torbjørn Leivestad |
| Oslo, Norway |
Fernando García López |
| Madrid, Spain |
Alison MacLeod |
| Aberdeen, Scotland |
Bénédicte Stengel |
| Villejuif, France |
Jane Tizard |
| Bristol, United Kingdom |
Christoph Wanner |
| Würzburg, Germany |
| Staff |
Kitty Jager |
| Managing Director |
Paul van Dijk |
| Medical Information scientist |
Ronald Cornet |
| Senior IT Specialist |
Friedo Dekker |
| Senior Epidemiologist |
Vianda Stel |
| Epidemiologist |
Annick van den Broek |
| Datamanager |
| Gita Guggenheim |
| Secretary |
 |
| Contributions as of May 1, 2005 |
|
 registries
sending selected aggregated data to be included in the annual
report |
 no
registry/no contribution/data not eligible for analysis |
Contact details |
| 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 |
| Visiting address |
| Meibergdreef 9 |
| 1105 AZ Amsterdam |
| The Netherlands |
| Phone: +31 20 566 7637 |
| Fax: +31 20 691 9840 |
| E-mail: erareg@amc.uva.nl |
| Website: www.era-edta-reg.org |
The ERA-EDTA Registry Working Groups: the backbone of the QUEST initiative |
|
| from Carmine Zoccali, Chairman of the ERA-EDTA Registry | |
 |
As illustrated in previous newsletters, a crucial step of the QUEST initiative is creating groups of motivated experts that give advice for the monitoring guidelines adherence and propose a new wave of research projects based on data collected within the frame of the ERA-EDTA Registry.
|
| Carmine Zoccali | |
| Read the slide presentations by Carmine Zoccali and Kitty Jager | |
The Quest initiative: a general framework by Carmine Zoccali |
|
| The Quest initiative: where we are, where we want to go, and the road that has been chosen by Kitty Jager | |
Bias: systematic error |
|
| From Kitty Jager, Managing Director of the ERA-EDTA Registry | |
|
In epidemiologic studies there are two broad types of error: random error and systematic error. In the design of a study epidemiologists will try to reduce both sources of error. In the interpretation of study results, at a later stage, readers will still need to be aware of those sources of error and to judge how they have been addressed. Another term for systematic error is bias. Studies can be biased because of the way study participants have been selected, because of the way the variables have been measured or by some confounding factor that is not (completely) controlled. Bias is a systematic tendency to underestimate or overestimate a parameter of interest because of a deficiency in the design or execution of a study. |
| Kitty Jager | |
A study on residual renal function within Europe |
|
From Vianda Stel, epidemiologist and member of the ERA-EDTA Registry staff |
|
|
From previous studies we know that the large differences in patient survival between European countries remain, even after adjustment for age, gender, primary renal disease, treatment modality and transplantation rate. Also, after adjustment for co-morbidity and mortality in the general population, the differences are slightly less, but they still exist.
We therefore wondered whether the differences in survival may in part be due to international differences in the stage of disease of patients starting renal replacement therapy (RRT), i.e. differences in residual renal function. Such differences would result in the so called lead-time bias, favouring the survival in countries with patients starting relatively early in the process of loss of renal function.
|
| Vianda Stel | |
Large controlled clinical trials in nephrology: the need is clear - what can a registry do about it? |
|
| From Christoph Wanner, member of the ERA-EDTA Registry Committee | |
 |
The hierarchy and classification of types of clinical research includes: (1) meta-analysis of several randomized clinical trials (RCTs) with original data, (2) confirmed RCTs, (3) single RCTs, (4) observational studies in cohorts of patients, (5) case control studies, (6) cross-sectional studies, (7) descriptive studies in series with literature controls, (8) case series without controls or (9) anecdotal case reports. |
| Christoph Wanner | |
| Announcements | |
The third "Introductory Course of Epidemiology" will be held in Würzburg (Germany) on October 9-11, 2005. |
|
|
On October 9-11, 2005 the ERA-EDTA Registry organises the third ERA-EDTA Epidemiology Course in Würzburg, Germany. Professor Wanner is the host of this course. The first two editions were held in Rome, Italy (September 2004) and in Toledo, Spain (March 2005).
On the basis of surveys among course participants these courses can be considered to be a true success. This is a small class course and therefore interested persons are invited to contact immediately the course co-organizer and ERA-EDTA Registry Manager, Kitty Jager. |
| Würzburg | |
| More information on this course are available on | |
| http://www.ndt-educational.org/wurzburg2005.asp | |
| Registry activities during the ERA-EDTA Congress in Istanbul (4-7 June, 2005) |
|
| 4 June - QUEST expert Working Group meetings followed by a Business meeting for national and regional registries, 11.00 a.m. to 3.30 p.m. | |
| 5 June - ERA-EDTA Registry Symposium. CRR Auditorium 10.30 to 12.00 a.m. | |
| 6 June - Hands-on Course - Clinical Epidemiology. Hall Museum 4. 10.30 to 12.00 a.m. | |
| More information are available at http://www.eraedta2005.org | |
| Forthcoming issues | |
| Newsletter 7, September 2005 | |
| Newsletter 8, December 2005 | |
|
|
