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The Official ERA-EDTA Newsletter Year 9 Issue 17

The Scientific Programme of the ERA-ED-TA Congress in Istanbul will contribute to the celebration of the 50th anniversary of our Society by having exciting new initia-tives.The schedule will begin by setting an early start in the morning of May 18th, with the ERA-EDTA Working Groups Scientific Fairs offering 30 CME Courses that will be available to Nephrologists of the nearby area thanks to a cheap daily entrance fee. The CME courses will allow participants to receive important updates in hereditary renal disease, immune mediated glomeru-lonephritis, cardiovascular complications, haemodialysis, uremic toxins, transplanta-tion and paediatric nephrology. During the entire Congress a particular focus will be provided on two scientific themes: Paediatric Nephrology, genetic dis-eases and early diagnosis of renal disease and Renal transplantation: how to improve organ recruitment and preserve long term graft func-tion.A disease-oriented thematic organization of the programme will guide attendants through the most recent advances in other relevant scientific areas, always integrating basic science with the clinical context, look-

Highlights from the Scientific ProgrammeFrom Rosanna Coppo, Chairperson of the Scientific Committee

Istanbul Is Waiting for You This MayFrom Gültekin Süleymanlar, President of the 50th ERA-EDTA Congress

We are h o n o r e d to be the host of the 50th ERA-E D T A Congress in the beautiful city of Is-

tanbul, where an outstanding scientific programme will make the 2013 ERA-ED-TA Congress a unique one, worthy of the golden anniversary year of our Society. The meeting will be held in the Istanbul Congress Center, which is a new building

ing at new risk factors, early biomarkers and new therapeutic perspectives.The ERA-EDTA Registry will present its most recent works. Other symposia will be held in collaboration with the American So-ciety of Nephrology and the Chinese Society of Nephrology and will present different as-pects of Nephrology in other continents.A true novelty will be the Overview of healthcare In Nephrology, Dialysis and Transplantation in Europe, where represent-atives of several European Countries will present “lights and shadows” of individual national system organizations for dialysis, transplantation and prevention of kidney diseases. Another novelty will be the Sym-posium dedicated to the Countries in which Nephrology is developing, to make them feel our congress as a moment of relevant networking of the entire Renal Community. Hands-on courses on interventional neph-rology and ultrasound in Nephrology and Master Classes will complete the high level educational programme.The gems of the scientific programme will be the three outstanding plenary lectures. We will have the honour to host a lecture of the 2011 Nobel Prize in Physiology and Medi-cine, Jules Hoffmann, on the discovery of in-

nate immu-nity from flies to hu-mans. The i n c o m i n g President of the ISN, Gi-useppe Re-muzzi, will present a plenary lec-ture with an attractive ti-tle: “Will it one day be possible to engineer a complete kidney? Problems and perspectives”. “Improv-ing outcome of patients with CKD: diets and enteral supplements“ is the last lec-ture which will be held by an outstand-ing expert of Turkish origin, Talat Alp Ikizler. Moreover, Mehmet Sukru Sever will give a talk on “The link between disasters and Nephrology” during the Opening Ceremony on May 18.I heartily invite all of you to join us in Istanbul for such an outstanding Con-gress.

located in the heart of the city within walking distance from most congress hotels.

Being a city that has been the home of several empires, religions and cultures, we feel that Istanbul, the big metropolis of today is a “col-lage” of all its past and its stakeholders. The city still houses sculptures of the Roman era, the biggest churches of the Byzantine Empire along with the mosques of the Ottomans and has been an incredible melting pot for people of all races and times.

We have asked the famous contemporary Turkish painter Mr. Ismail Acar to create a special image for this congress, this “collage” reflecting several aspects of our city that

against all odds functions harmoniously creating the current magic of an ageless city. We hope that like this painting re-flects the daily life of our city, our discus-sions during the congress will reflect all aspects so as to give better patient care with improvements in all its elements from surgery to home care, from phar-maceutical industry to nursing. As the local organizing committee, we are look-ing forward to welcoming you to Istanbul to celebrate our golden year in May 2013 to share the spectacular scientific pro-gramme with us and planning the next 50 years of nephrology in Europe.

Gültekin Süleymanlar

Rosanna Coppo

PresidentRaymond Vanholder, Belgium

Secretary-TreasurerAndrzej Wiecek, Poland

Chairperson of Administrative OfficesMarkus Ketteler, Germany(Chair of the Paper Selection Committee)

Editor-in-Chief of “Nephrology Dialysis Transplantation”Carmine Zoccali, Italy

Chairperson of the RegistryChristoph Wanner, Germany

Ordinary Council MembersPeter Blankestijn, NetherlandsDenis Fouque, FranceJonathan Fox, UKLoreto Gesualdo, ItalyMarian Klinger, PolandZiad Massy, FranceMehmet Sukru Sever, TurkeyVladimir Tesar, Czech Republic

President of the 50th Congress (Istanbul 2013)Gültekin Süleymanlar, Turkey

Chairperson of the Scientific Committee of the 50th Congress (Istanbul 2013)Rosanna Coppo, Italy

Editor-in-Chief of “Follow us”Andrzej Wiecek, Poland

Co-Editor of “Follow us”Mehmet Sukru Sever, Turkey

ERA-EDTA websitewww.era-edta.org

50th Congress website (Istanbul 2013)www.era-edta2013.org

51st Congress website (Amsterdam 2014)www.era-edta2014.org

NDT-Educational websitewww.ndt-educational.org

ERA-EDTA Registry websitewww.era-edta-reg.org

ERA-EDTA Thinks about the Heart: EURECA-m Working GroupFrom Alberto Ortiz, Secretary of EURECA-m

Next deadline to apply is July 1, 2013. All information, as well as the regulations to apply, is available on the ERA-EDTA website www.era-edta.org, under the “Fellowship Programme” section.

In oder to simplify the contacts between the applicants and the hosting centres, the ERA-EDTA has created two lists of Clinical and Research Centres that wish to receive fellows.The Call for the European Clinical and Research Centres interested in receiving fellows is currently open; you can find all the necessary information to apply by checking the “Fel-lowship Programme” section of our website and/or by contacting [email protected].

The Fellowship Programme

Alberto Ortiz

The bidirectional link that associates renal and cardiovas-cular diseases, the high risk of the death signaled by their coexistence and the considerable epidemiological burden imposed by this link is at the basis of the emerging of a new discipline aiming at making the borders between nephrol-ogy and cardiovascular medicine even more permeable than before.

The EUropean REnal and CArdiovascular Medicine (EU-RECA-m) Working Group (www.era-edta.org/eureca-m/eureca-m.htm) was launched in February 2009. EURECA-m is the brainchild of a group of clinicians and investiga-tors led by Carmine Zoccali (now Gérard London) aiming at reducing the high cardiovascular risk of chronic kidney disease patients. The scope of EURECA-m is to promote collaborations among European centers pursuing research

in the overlapping area of cardiovascular and renal medicine, to identify research priorities and to educate on cardiovascular and renal medicine. EURECA-m coordinates efforts with other ERA-EDTA groups, such as the European Renal Best Practice (ERBP) group, national societies and other research groups such as REDINREN.

EURECA-m has set up a biobanked Registry of end-stage renal disease patients with exten-sive cardiovascular phenotypic characterization and has obtained ERA-EDTA funding for the 2013 launch of a randomized clinical trial, Lung Water by Ultra-Sound guided Treat-ment to prevent death and cardiovascular complications in high risk end-stage renal dis-ease patients with cardiomyopathy (LUST). LUST will test a treatment policy guided by lung ultrasound-B lines to prevent death, decompensated heart failure, myocardial infarc-tion and progression of left ventricular hypertrophy and dysfunction and hospitalization in high risk hemodialysis patients.

Dissemination of knowledge is achieved by CME courses and publications. Annual CME courses have taken place in Barcelona, Paris, and Ankara and will be held in Lyon in April 2013. The inaugural issue of the newly launched Kidney Int Sup journal featured a collec-tive brainstorming on the key issues within the subject of “Cardiovascular and renal medi-cine, an expanding territory” and additional manuscripts have been published in Nat Rev Nephrol, Nephrol Dial Transplant and Am J Kidney Dis.

EURECA-m is intent on bringing on board young enthusiastic nephrologists as well as seasoned basic and clinical researchers that push to achieve the common goal of reduc-ing cardiovascular morbidity and mortality in chronic kidney disease. During 2013 the EURECA-m Board will be partially renewed.

Knowledge about the prevalence and inci-dence of CKD in Eu-rope widely exists in the field of renal replacement t h e r a p y , e s p e c i a l l y from stage 5D CKD

children and adult patients (hemo- and peritoneal dialysis). The information is collected on an annual basis via the na-tional and regional renal registries in Eu-rope (www.espn-reg.org; www.era-edta-reg.org). The analyses and demographic picture are presented at the yearly ERA-EDTA Congresses, publications in kidney journals and through this site www.era-edta-reg.org/files/annualreports/pdf/An-nRep2010.pdf.

From Christoph Wanner, Chairman of the ERA-EDTA Registry

The Epidemiology of CKD in Europe: What is at the Base of the Iceberg?

Christoph Wanner

From Jacques Bernheim, Chairman of the ERA-EDTA Ethics Committee

Ethics - The Very First Priority for ERA-EDTA

Adherence to basic and ac-cepted ethi-cal principles is important, and eventu-ally may be considered a requirement for all those who are in-volved in the practice of medicine and are lead-

ing associations like the ERA-EDTA. The ERA-EDTA should take a critical look at the way the association conducts the mor-al and ethical behavior of the profession, nephrology, and how the respect and the confidence vis à vis its leadership is main-tained at a high standard. Undoubtedly truthfulness and independence are moral instruments to strengthen the professional influence of the ERA-EDTA. The role of ERA-EDTA as a scientific asso-

Information about earlier stages of CKD is scarce or does not exist on a larger scale in Europe. Only two countries (Norway and UK) report on the prevalence of CKD in stages 1/2/3 & 4 but data are quite con-sistent (N: 2,7/3.2/4.2 & 0.2, total 10.3%; UK: 2.8/3.2/4.8 & 0.2, total 11.0; JASN 2006;17:2275). There are no pan-European Health Examination surveys including kidney disease on the Health 2020 policy framework and strategy and the list of lead-ing causes of disability-adjusted life years (DALYs) loss for EU countries (Global Bur-den of Disease study WHO 2008) should urgently be revised. Although the diseases leading to renal failure appear rare, the re-sulting treatment costs are high for a given disease entity.

To balance this lack of information, Nation-al, government based funding agencies and the ERA-EDTA have started to support the formation of large cohorts (i.e. CKD Rein, GCKD study, Bind-NL, EQUAL study). The ERA-EDTA Registry in Amsterdam has fi-

nalized an inventory and created a data-base where all the trial or data collection initiatives are ‘registered’. Two working groups of the ERA-EDTA on immuno-nephrology and on inherited kidney disorders are collaborating with the Registry by raising knowledge through specific registries in the field of rare diseases (glomerulonephritis and cystic kidney disease). A challenge remain the rare diseases (ASTOR, Alport Syndrome Treatments and Outcomes Registry, The Fabry Registry, CCIR – Cure Cystinosis International Registry).

The ultimate goal should be to slowly closing the gap in earlier stages of CKD, to assist in the formulation of policies for the care of renal failure in the EU. If this is done there will be considerable savings and many patients, including the grow-ing group of elderly, will gain in quality of life.

ciation is to consider carefully the best ways of critical debates and to offer the most accu-rate recommendations. As the costs of renal replacement therapies (RRT), in particular of dialysis remain high, the ERA-EDTA has to propose health care based on wise, efficient and cost effective recommendations know-ing the clear-cut limitations in health care in-vestments. In trying to help to control health care resources, in considering the primacy of patients’ welfare, in being able to evaluate as honestly as possible the place of new tech-nologies, the role of the ERA–EDTA leader-ship will continue to be beneficial.

The impact of the Ethics Committee is im-portant to maintain a continuous ethical concern and to facilitate the ethical thinking of the council, committees’ members and ex-perts. Ethical suggestions proposed by the Ethics Committee will favor ethical consid-erations in debates and recommendations of working groups, promoting, in the long term, systematic ethical thinking. At the beginning of the third millennium the ERA-EDTA has accepted the idea that ethi-

cal advice is of prime importance to limit the risks of negligence, conflict of inter-est or imprudent decisions and to offer guidelines recommendations based on independent expertise, balanced clinical judgments, and evidence - based medi-cine.

The Ethics Committee is a partner to find accurate solutions to the existential ques-tions of a supranational scientific medi-cal association like ERA-EDTA, dealing with national organization’s specificities, culture differences and common ethical concerns, and to stimulate ethically con-firmed professional debates and recom-mendations.The requests for a more strict control of cost effectiveness will increase the ethical concerns of practitioners and nephrolo-gists as well as of the medical and pa-tients associations. The role of the Ethics committee will remain pertinent to equil-ibrate the impacts of society rules which affect the appropriate development of adapted nephrology services.

Jacques Bernheim

What is in the Pipeline? Upcoming Guidelines from ERBP

From Wim Van Biesen, Chairman of the ERBP Advisory Board

What we areThe mission of ERBP is to improve the out-come of patients with kidney disease in a sustainable way, through enhancing the accessibility of knowledge on patient care, in a format that stimulates its use in clinical practice. To obtain these goals, ERBP will need to explore, understand, and evaluate the needs of our stakeholders: the patients, their next of kin, and the healthcare work-ers taking care of them.We will also compile available evidence in a scientifically rigorous way. We will dis-seminate this guidance, not only amongst nephrologists, but also to nurses and pa-tients, so that they can make a decision to-gether with their treating healthcare work-er. Thereto, we will transfer our guidance to patient education flyers, which can then be translated in different languages.

You can be part of this...ERBP is more than an institution where experts tell other people what they should do. Therefore, we will also need your help and input. Those interested should take a look at the“instructions for authors” ”link at our website www.european-renal-best-practice.org.

Recent publications by ERBP* Medical treatment of depression in dialysis patients: a systematic review

Wim Van Biesen

* Management of crush victims(AVAILABLE IN ENGLISH, SPANISH, ITALIAN, CHINESE and TURKISH)* Position statement on management of AKI* Position statement on management of Primary Oxalosis* Flyers and information for patients and care givers

• What should my hemoglobin be?• What does hepatitis C mean to me as a CKD patient?• Are high flux dialysers better than low flux ones?• Are venous catheters safe in terms of in-fections?• Why is it important to test my peritoneal membrane function as a PD patient?• What dialysis modality should I choose?

Upcoming documents* The ERBP guideline on management of donor and recipient of kidney transplant in the peri-operative phase (including preparation and ac-ceptance of living donors)Guidance will be provided on different topics: i.e. how to optimize and handle im-munological aspects; donor criteria for liv-ing donation; cardiovascular work-up of a transplant recipient; how to deal with ac-ceptors with a history of malignancy or of a disease that potentially recurs after trans-plantation and so on. Publication is expect-ed at the end of the year.

* The ERBP guideline on management of CKD patients with diabetesIn this guideline clinical questions were drafted in 4 different categories: 1. mo-dality selection, 2. glycemic control, 3. cardiovascular prevention, 4. manage-ment of non-cardiac comorbidities.* Management of Fabry disease patients* Management of HyponatremiaA dedicated one day CME will be organ-ised in Ghent on March 22, 2013. ERA-EDTA will distribute 33 travel grants amongst members, for more informa-tion, as well as the necessary application form regarding this matter visit the ERBP website www.european-renal-best-prac-tice.org.

The Newly Elected YNP Board and ChairmanIn January 2013 the members Young Nephrologists Platform Board were elected.

Dr Miklos Zsolt Molnar from Hungary was elected as the Chairman of this new committee:

The other members of the YNP Board are:• Dr Davide Bolignano (Italy)• Dr Ana Carina Ferreira (Portugal) • Dr Mariusz Kusztal (Poland)• Dr Maria Majernikova (Slovakia) • Dr Kultigin Turkmen (Turkey)

An ex-officio member of the YNP Board, as the winner of the 2012 Young Investigators Award, is Dr Giovana Seno Di Marco (Brazil).

The new Board will immediately begin working to achieve the YNP goals. Among other duties they have to prepare a YNP Session and a YNP meeting for the ERA-EDTA Istanbul Congress in May 2013.

We wish them all a very prosperous term!

Miklos Zsolt Molnar

From the History of ERA-EDTA: Honorary Members,

Heroes of Our AssociationFrom Andrzej Wiecek, ERA-EDTA Secretary-Treasurer

Dear Colleagues,

We are approaching the 50th anniversa-ry of our Association. At the Congress in Istanbul we will be celebrating this respectful jubilee. I believe that this is a great occasion to remind all members about our Honorary Members. This is a very important recognition given by the Society to an extremely limited number of persons for the great contributions that they have given, during their career, to Nephrology and our Society. During the 50 years of the history of ERA-EDTA only 17 persons were ever given this recogni-tion. Below you will find the presentation of the first three honorary members of our Society – this title was given for the first time in 1982. Unfortunately, especially among the younger generation, not much is known about them today, therefore it is even more important that we remember these great persons so they can inspire all of us – young and not so young.

The first titles of Honorary Members were given during the ERA-EDTA Congress in Madrid, Spain in 1982. The first recogni-zed persons were William Drukker and Arthur Colville Kennedy. Two years later in 1984 the honorary membership was gi-ven to Luigi Migone.

William Drukker (born on January 11th, 1910, died on 26th August, 1992) was one of the three EDTA founders. Together with Stanley Shaldon and David Kerr in 1963 they founded the European Dialysis and Transplant Association during the Symposium on Acute Renal Failure which took place in the Royal Free Hospi-tal in London. W. Drukker was the first EDTA Secretary-Treasurer from 1964 to 1969. He was also a member of the first EDTA Council. In 1969 he was one of the founders of the EDTA Registry and first Chairman of this successful institution. He was one of the pioneers of the hae-modialysis in the Netherlands: in fact he installed the first regular haemodialysis programme for chronic renal failure in the Netherlands in 1963.

Arthur Colville Kennedy (born on October 23rd 1922, died on December 30th 2009) was one of the first EDTA Councilors. He was elected to the second term of the Council in 1967. A. C. Kennedy was the first EDTA Pre-sident elected for the term of 3 years. Before him the Presidency was for one year and was also linked to the organization of the EDTA Congress (that produces the only EDTA pu-blications of those years, the Proceedings). He was one of the pioneers of dialysis in the United Kingdom. He received the title of Commander of the Order of the British Em-pire (CBE).

During the ERA-EDTA Congress in Flo-rence in 1984 a third “Honorary Member” recognition was given. Twelve years after the first Congress in Florence, its President Luigi Migone (1912-2002) became an Hono-rary Member. In 1967 he was elected to the EDTA Council with A. C. Kennedy. In 1972 he was the President of the mentioned above Congress in Florence and also the President of our Society. L. Migone founded the Italian Society of Nephrology in Parma in 1957, he became its honorary president. During his career he held positions of high responsibili-ty in the International Society of Nephrology.

If you wish to learn more about our first three Honorary Members I encourage you to visit the links below and read the stories of three great nephrologists and wonderful men:

William Drukker: http://ndt.oxfordjournals.org/content/8/2/99.full.pdf

Arthur Colville Kennedy:h t t p : / / c k j . o x f o r d j o u r n a l s . o r g / c o n -tent/3/2/211.full

Luigi Migone:www.gazzettadiparma.it/primapagina/det-taglio/5/41807/Migone_nefrologo_di_fama_mondiale.html

William Drukker

Arthur Colville Kennedy

Luigi Migone

Members of ERA-EDTA know the people who run the society: the President and the other Council members. However more people are essential to the society, the ones who turn the Council’s ideas into tangible reality: the staff of the ERA-EDTA Headquarters. They are often referred to as the Parma Team because the office is in that city, but some of them live in some other parts of Italy, working from their homes.

Anna Maria Manara and Monica Fontana were the starting core of the current team, starting their involve-ment with ERA-EDTA in 1990 and 1991 respectively. At that time they were secretaries of the Secretary-Treas-urer, but the society had a very different structure then. It is correct to say that the Parma Team developed gradually while ERA-EDTA expanded its activities.

Anna Maria got more and more involved in administration and in the organization of annual congresses, becoming the head of the team when the increasing tasks required more people to handle them. Monica still takes care of the Membership Office, but now she is also a spoke-person of ERA-EDTA in relations with inter-national societies, alliances, institutions.

Unlike many other societies, ERA-EDTA handles directly its annual congresses by its in-house team of pro-fessional congress organizers. This is not just cost-effective, it also guarantees to the governing body of ERA-EDTA a direct control on congresses in all their aspects. For instance Silvia Menoni, who takes care of the sci-entific programs, collaborates with the Chairperson of the Scientific Committee (a role that changes annually) but also reports constantly to the Council through one of its members.

Most members of the ERA-EDTA Council have specific duties, like ministers in a cabinet, and each one of them can easily contact the staff who work in his/her area of interest and obtain immediate information. In the same way, each person of the staff, when instructions are needed to face a situation that is beyond

the standard routine, can ob-tain instructions directly from the Council member who is in charge of that specific area.

The names of the staff mem-bers, together with their du-ties, are listed in the inset. Some of them have moved from one role to another, ac-cording to the society’s needs and also according to their talents. With the addition of a new member at the beginning of 2013, the staff has reached the number of 13, which happens to be also the number of Council members. Clearly this society does not care for superstition.

Who’s in the ERA-EDTA Headquarters?From Anna Maria Manara, ERA-EDTA General Manager

Follow usThe official ERA-EDTA [email protected]/followus.htm

Editor-in-Chief: Andrzej WiecekCo-Editor: Mehmet Sukru SeverManaging Editor: Silvia MenoniGraphic design: PierLuigi Franchi

ERA-EDTAc/o ERA-EDTA Administrative OfficeVia Spolverini 243126 Parma - Italy

To be distributed free of charge to all ERA-EDTA members www.era-edta.org

Follow usThe official ERA-EDTA [email protected]/followus.htmTo be distributed free of charge to all ERA-EDTA members www.era-edta.org

www.era-edta2013.org

EDTA Istanbul 2013 man.indd 1 8-05-2012 18:41:58

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Piet Mondrian, Molen: The Winkel Mill in Sunlight, 1908© 2012 Mondrian/Holtzman Trust c/o HCR International USA

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