ERA-EDTA President
Gérard M. London
Paris, France
Registry Committee
Christoph Wanner (Chairman)
Wuerzburg, Germany
David Ansell
Bristol, United Kingdom
Christian Combe
Bordeaux, France
Liliana Garneata
Bucharest, Romania
Faiçal Jarraya
Sfax, Tunisia
Pietro Ravani
Cremona, Italy
Ramon Saracho
Santa Cruz de Tenerife, Spain
Franz Schaefer
Heidelberg, Germany
Staffan Schön
Stockholm, Sweden
Enrico Verrina
Genoa, Italy
Kitty Jager
Managing Director, Senior Epidemiologist
Ronald Cornet
Senior IT Specialist
Friedo Dekker
Senior Epidemiologist
Vianda Stel
Marlies Noordzij
Karlijn van Stralen
Anneke Kramer
Medical Information Scientist
Annick van den Broek
Data manager
Moniek van de Luijtgaarden
Mark Titulaer
Data manager
contributors map
Contributions as of June 1, 2010
red registries contributing individual patient data to the ERA-EDTA registry database
orange registries sending selected aggregated data to be included in the annual report
white 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

Update on Rare Diseases

From Christoph Wanner, ERA-EDTA Registry Chairman

In May 2009 we reported in our Newsletter that the Registry will aim to focus on rare diseases that are going to be dissected from the large database. We now provide the full spectrum of diseases that are documented as leading causes for dialysis initiation throughout Europe (see figure). To move in that direction appeared to be timely since WGIKD - Working Group on Inherited Kidney Disorders has been created and officially recognised as ERA-EDTA Working
Group. This working group takes into account the wide diversity of the inherited kidney disorders area, including the adult and paediatric nephrology, and the clinical, research, genetics, physiology and pathophysiology aspects. Newsletter 16, June 2010 reported that research has successfully initiated with Oliver Gross and his team from Göttingen, Germany in respect to a “European Alport Registry joint analysis”.
Substantial analyses are going to be published this year. Another project in the environment of rare diseases was started with Jerome Harambat from France on “Treatment strategies and outcomes of paediatric renal transplantation in Europe”.


 Christoph Wanner
Rare Diseases
Numbers in parentheses represent number of patients
Dr. Harambat has moved to Amsterdam on a research grant to explore the database. In this respect, the most successful collaboration is currently being done with the European Society for Paediatric Nephrology (ESPN)/ERA-EDTA Registry. Ongoing exploration of the database is with cystinosis, oxalosis (i.e. primary hyperoxaluria type 1) and autosomal recessive polycystic kidney disease. We are optimistic that our spectrum of research and data analysis from rare diseases to large cohort studies (focussed data collection) will further attract young researchers and be successful in the future.
Renal prognosis in cystinosis patients – Results from the ESPN/ERA-EDTA Registry
From Karlijn van Stralen and Elena Levtchenko (Belgium)


Cystinosis is a rare autosomal recessive disorder of lysosomal cystine transporter cystinosin encoded by the CTNS gene (17p13). The disease affects one to two per 100,000 newborns with higher incidence in some North-European regions such as Nord Pas de Calais and Bretagne in France. Cystinosis has been subdivided in an infantile form, also termed nephropathic infantile cystinosis (NC), a juvenile form that is characterized by less severe renal disease, and a late-onset form with primarily ocular symptoms. During early childhood, kidneys represent the primarily affected organs in NC and nearly all patients with NC develop renal Fanconi syndrome during the first year of life. Without treatment, most children progress to end-stage renal disease before the age of 10 years. Cystine-depleting drug cysteamine was first introduced as a potential treatment for NC in 1976, but was only used on a broader scale at the end of 1980s. Few excellent single-centre trials demonstrated improved renal function survival in cystinosis
patients adequately treated with cysteamine, however, broad-scale outcome data are lacking.
The ESPN/ERA-EDTA registry has collected, in conjunction with the ERA-EDTA registry, data from 31 European countries
on paediatric patients entering renal replacement therapy. During the ERA-EDTA conference, we will show long-term
outcome of cystinosis patients between 1979 and 2008, a period that encompasses the introduction of treatment with cysteamine, and compare them to a cohort of patients entering renal replacement therapy for other renal diseases. During the ERA-EDTA Registry symposium (Saturday June 25, 8.00-9.30 a.m.) results from this study will be presented.

Karlijn van Stralen

The DIAlysis and Pregnancies: a European Registry (DIAPER) study

From Marlies Noordzij, Graham Lipkin (UK), and Enrico Imbasciati (Italy)

Women with chronic kidney disease often have amenorrhea but may still occasionally ovulate and thus conceive. Although unusual, pregnancy even occurs in women treated with dialysis. It is widely stated and believed that the frequency of pregnancy in women of childbearing age (14-44 years) on dialysis is increasing, possibly due to improved and intensified dialysis regimens. Also the survival of infants born to women treated with dialysis seems to be increasing. However, these developments are not well documented.
At the ERA-EDTA Registry we are currently performing a systematic review of the literature on this topic in the last 30 years (1980-2010) to get a complete overview of what has already been published on this topic. This systematic review includes 35 case series and surveys comprising a total of 451 pregnancies in 430 women treated with chronic haemodialysis or peritoneal dialysis. The number of pregnancies reported in the international literature over the last 3 decades is limited, because pregnancies in women treated with dialysis are difficult to study. This is
because they remain uncommon and occur in widely separated dialysis centers. For the same reason, most nephrologists
will encounter only one or two pregnant dialysis patients during their time in practice. As a result, most of the published reports on pregnancies in women with end-stage renal disease are case reports or small case series. There some reports of larger groups of women treated with dialysis by the time of conception from the United States (registry of 184 cases) 1 and Brazil (52 cases from one center) 2. However, there are, to our knowledge, no European
reports on larger groups of cases available.
Therefore, we initiated the “DIAlysis and Pregnancies: a European Registry (DIAPER) study”. With this study we aim to estimate the incidence of pregnancies in chronic dialysis patients between 2005 and 2010 in different European countries, by means of data collection using an electronic survey. In addition, we aim to assess which treatment regimens are used for pregnant dialysis patients and which outcomes of pregnancy are most common in mother and child. The results of this study may be used to optimize fetal and maternal outcomes.
The data collection for the DIAPER study is expected to start in the autumn of 2011 and we hope that many of you will participate so that we can get a complete overview of Europe. For more information please contact Marlies Noordzij at m.noordzij@amc.uva.nl.

1. Okundaye I, Abrinko P, Hou S. Registry of pregnancy in dialysis patients. Am J Kidney Dis 1998; 31: 766-773.
2. Luders C, Martins Castro MC, Titan SM et al. Obstetric
Outcome in Pregnant Women on Long-term Dialysis: A Case Series. Am J Kidney Dis 2010; 56: 77-85.








   Marlies Noordzij
ERA-EDTA Registry Activities during the ERA-EDTA Congress
Prague, June 23-26, 2011

• Thursday, June 23, 10.00 - 12.00
Meeting for national and regional Registries

• Saturday, June 25, 08.00 - 09.30
ERA-EDTA Registry Symposium
1) Introduction on the Registry 2011
Christoph Wanner, Würzburg, Germany
2) Is survival after transplantation associated with pre-transplant dialysis modality?
Anneke Kramer, Amsterdam, Netherlands
3) In RRT patients non-cardiovascular mortality is as important as cardiovascular mortality
Judith Vogelzang, Amsterdam, Netherlands
4) Reasons to start dialysis
Kitty Jager, Amsterdam, Netherlands
5) Competing risk models: registry case studies,
Marlies Noordzij, Amsterdam, Netherlands
6) Long-term outcome in cystinosis: data from ESPN/ERA-EDTA Registry.
Elena Levtchenko, Leuven, Belgium


ERA-EDTA Registry publications

In the first half of 2011, almost 20 papers with Registry authorship have been published.
A complete list of these publications can be found on our website: www.era-edta-reg.org.
Forthcoming issues
Newsletter 19, November 2011
why become a member
era-edta renewal membership