However, these programs neglect patients with severe CKD who die before the onset of kidney failure or who don’t receive renal replacement treatment when they reach the terminal phase of disease. A surveillance program for CKD stages 4 and 5 would enable monitoring the magnitude and the care of this high-risk, high-cost segment of the population, and possibly to reduce both the risk of progression to kidney failure and the cost of dialysis and transplantation.
The Kidney Disease Improving Global Outcomes (KDIGO) initiative now recommends the establishment of surveillance programs for CKD stages 4–5. Some European countries have already expressed the intention of starting programs of the kind and, in general, these are expected to be based on existing renal registries or associated with diabetes, hypertension, cardiovascular diseases and oncology registries.
While the creation of these registries represents a great opportunity for ameliorating secondary and tertiary prevention in nephrology, we should be aware that they constitute an enormous challenge for the organizational and logistic problems they pose. In this regard standardized data collection is a challenge that should be taken just now, in the creation phase of stage 4-5 CKD registries. It is fundamental for the various registries to start with a common language. Such a language is needed for comparing indicators of disease severity and other parameters among different regions and nations and for performing sound analyses useful for resource planning, for benchmarking and for epidemiologic research in general. Forty-two years ago, when the ERA-EDTA Registry was created, notwithstanding the efforts of our founder fathers, each country set up his own set of indicators and definitions. Only recently, with NephroQuest, an agreement was established among European renal registries on an enlarged set of well defined clinical indicators.
Making treasure of this experience, an early collaboration between stage 4-5 CKD registries may be very useful to build a common language for future collaboration and data sharing.
The ERA-EDTA Registry feels as an ethical obligation starting this process. For this reason, also as a continuation of contacts started in Barcelona in 2007, this year in Stockholm we will explore the possibility of a stage 4-5 ERA-EDTA European Renal Registry.
We invite all colleagues interested in CKD epidemiology and in renal registries to join us on May 10th at 12 am at the Stockholm International Fairs (Hall A8) for the Second Pre-Congress Meeting on “The Epidemiology of CKD in Europe: National Societies surveys and initiatives”.

Carmine Zoccali, ERA-EDTA Registry Chairman