NEWSLETTER Newsletter N. 24 - May 2016 New kids on the block in the ERA-EDTA Registry

The coverage of Europe by the ERA-EDTA Registry keeps of , Lithuania and Switzerland for the fi rst time growing and currently we are receiving data on renal contributed data to the ERA-EDTA Registry. Below these 3 replacement therapy (RRT) from 49 national and regional registries introduce themselves and tell how their registries registries in 34 countries. Last year, the renal registries developed over time.

CYPRUS LITHUANIA

By Dr Kyriakos Ioannou, By Edita Žiginskienė, Cyprus Renal Registry representative Lithuanian Renal Registry representative

With a population of less than one No precise data about patients on million, Cyprus is one of the smallest RRT in Lithuania were available until countries in the EU. Nephrology 1996 and a renal registry was absent. services are offered by both public Starting from 1996, in December and private hospitals. However, of each year all haemodialysis RRT is only provided by 6 public centres were visited by trained hospitals, and transplantation only doctors and fellows who collected by the largest hospital on the island. data manually using special paper Each year, approximately 160 questionnaires. The data collection patients start dialysis and around was initiated by the Nephrology 30 receive a transplant. Although each hospital collects its Clinic of the Lithuanian University of Health Sciences in own data, there has never been an attempt to collect and Kaunas. From 2003, the Lithuanian Nephrology, Dialysis analyse these data in an organized manner. and Transplantation Association (LNDTA) started to guide Collaboration on research projects with ERA-EDTA and support this database. Information about the number of Registry staff, especially Dr Stel, led to the idea of Cyprus patients and haemodialysis stations, demographics, etiology of contributing data to the ERA-EDTA Registry. After the fi rst renal failure, dialysis quality, blood tests, and medication was contact in 2014 and it took one year for the 6 hospitals to obtained. Every data collection was followed by dissemination organize data collection in a uniform manner. In 2015, with and discussion of the results within the Lithuanian and Baltic the contribution of Dr Pippias who visited Cyprus and nephrological communities. From 2013, additional data helped boost this effort, we provided for the fi rst time data collection was started, including number of RRT centres, for the 2013 Annual Report. Now, all hospitals regularly patients per centre and the incidence and prevalence of RRT provide data to the Cyprus Renal Registry and the ERA- by treatment modality. In 2015, aggregated data on RRT in 2013 EDTA Registry. were for the fi rst time submitted to the ERA-EDTA Registry. In I feel the establishment of the Cyprus Renal Registry will the same year, collection of detailed data on dialysis patients help to guide future policies on RRT provision and CKD was legally validated by the Ministry of Health in Lithuania. prevention in Cyprus and to plan future studies. I feel great Each dialysis centre now has to fi ll in a questionnaire and gratitude to those staff members of the Registry who helped LNDTA is responsible for the analysis and dissemination of the accomplish this idea and to my Cypriot colleagues who data. It is planned to include data on transplanted patients to shared this dream and made it a reality. this database in the near future.

SWITZERLAND

By Patrice Ambühl, 3712 patients from 81 centers were Swiss Renal Registry representative reported to the Regis-try, representing a coverage of 95%. This year, a new The Swiss renal registry quality assessment program (srrqap) was online analysis tool was made available founded in 2006 by the Swiss Soci-ety of Nephrology and collected to all participating centres, allowing data from dialysis patients exclusively. In the fi rst 6 years, coverage the generation of a customized of the Swiss dialysis population was rather low (about 40%) and report of the own patient population, as a consequence Switzerland was not represented in the ERA- including benchmark comparisons EDTA Registry. In 2012, a new dialysis contract was established, with the entire Swiss dialysis cohort. which made data collection mandatory by law, and a percentage Ongoing and upcoming pro-jects from the dialysis tariff became deductable to fi nance the dialysis include the electronic import of registry. These measures allowed reestablishing the srrqap in a laboratory data, establishing a national more professional manner. First, a user friendly online platform auditing system, and collection of was developed for data entry. Second, a project coordinator was demographic data from the Swiss transplant population. The hired to implement the new platform. In 2015, the fi rst data goal for 2017 is to contrib-ute individual instead of aggregated collection for the 2013 census could be accomplished. Data from patient data to the ERA-EDTA Registry.

RREGISTRYEGISTRY NNEWSLETTEREWSLETTER 005_2016.indd5_2016.indd 1 005/05/165/05/16 05.3305.33 Encouraging kidney transplant outcomes from older deceased donors: A paired kidney analysis by the ERA-EDTA Registry by Maria Pippias, The Netherlands Compared to the old recipients the mean number of functioning graft years at 10 years was six Over the past two decades months longer in the younger and much younger ERA-EDTA President demand for transplantable recipients. Ten-year graft survival was 54% and Andrzej Wi cek Katowice, Poland organs has resulted in 60% for the younger and much younger recipients, an increased utilisation of older ‘marginal’ and 40%-49% for the paired old recipients (see deceased donor kidneys. Subsequently the fi gure). Compared to old recipients, there was a Registry Committee median age of deceased kidney donors has risen similar risk of death-censored graft failure, but a to approximately 55 years old. The outcomes of lower risk of graft failure. Furthermore, there was Ziad Massy (Chair) Paris, France kidneys transplanted from deceased donors aged no difference in estimated glomerular fi ltration ≥55 years into recipients of differing ages in the rate at 7 years. These 10-year survival probabilities Fergus Caskey current era are lacking. This information could of older deceased donor kidneys are encouraging Bristol, United Kingdom assist transplant organisations when allocating and remarkably higher than prior published Cécile Couchoud available organs and clinicians when accepting outcomes. This study highlights the need to re- Saint Denis La Plaine, France an older deceased donor organ. Using renal- evaluate transplant outcomes to ensure up-to- and transplant registry data from nine European date allocation strategies and guidelines in order Marie Evans countries/regions we performed a prospective to maximise public health gain from the limited Stockholm, Sweden observational study by means of a paired kidney organs that are available. Patrik Finne analysis. Our aim was to determine the survival , Finland outcomes of two kidney allografts donated from Figure 1. The 10 year cumulative risk of graft failure the same older deceased donor and transplanted or death following a kidney transplant from a deceased Jaap Groothoff into two recipients; a recipient younger than donor aged 55 to 70 year, by recipient age. , Netherlands the donor and a recipient of Jérôme Harambat similar age to the donor. Bordeaux, France The study consisted of 1,410 adult transplant recipients James Heaf transplanted between 2000 Copenhagen, Denmark and 2007 with an allograft Faiçal Jarraya from a deceased donor aged Sfax, Tunisia 55-70 years. Each donor donated two kidneys; one Maurizio Nordio Padua, Italy recipient was either ≥6 to <13 (’younger’) or ≥13 years Ivan Rychlik younger (’much younger’) , Czech Republic and the second paired recipient was of similar age to Staff the donor (’old’). Kitty Jager ERA-EDTA Registry activities Managing Director/ rd Senior Epidemiologist during the 53 ERA-EDTA Congress in Vienna, Austria Ronald Cornet CME 20: Cross-talk in Renal Epidemiology - Vascular access in children on hemodialysis Senior IT Specialist Saturday May 21, 15:30 – 17:30 h, Hall M Michael Böhm, Austria - Transitional research in nephrology - Public - The effect of age on the prevalence of protein Vianda Stel Health energy wasting among elderly Stage 4 CKD Epidemiologist Simon Fraser, United Kingdom patients - Chances and challenges of using routine data Marie Evans, Sweden Marlies Noordzij collections for renal health care research. - Beta-blockers and outcomes in diabetic dialysis Epidemiologist Gert Mayer, Austria patients: data from EURODOPPS Anneke Kramer - Prediction models Christiane Drechsler, Germany Medical Information Scientist Benedicte Stengel, France - The credibility of subgroup analysis Posters Maria Pippias Georg Heinze, Austria Posters presenting MD / PhD Student - Choosing the correct competing risk method - studies performed not always straightforward within the national Arno Weerstra Vianda Stel, The Netherlands and regional renal Data Manager - STROBE and the quality of reporting registries can be found observational studies in nephrology in the Poster Area. Gita Guggenheim Fergus Caskey, United Kingdom Secretary ERA-EDTA Symposium 3 Registry booth ERA-EDTA Registry Symposium Please visit our booth Sunday May 22, 8:00 – 9.30 a.m., Hall E in the exhibition hall - Lifetime risk of Renal Replacement Therapy in to meet the Registry Europe staff and for questions Jan Van Den Brand, The Netherlands on educational - Transplanting kidneys from older deceased activities, research donors: a comparison of outcomes in young collaborations or other and old recipients registry matters. www.era-edta-reg.org Maria Pippias, The Netherlands

RREGISTRYEGISTRY NNEWSLETTEREWSLETTER 005_2016.indd5_2016.indd 2 005/05/165/05/16 05.3305.33