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Chronic renal failure; Dialysis; Kidney transplantation ; Insuficiència renal crònica; Diàlisi; Trasplantament de ronyó ; Insuficiencia renal crónica; Diálisis; Trasplante de riñón ; Chronic kidney disease (CKD) is a major health problem because of its high prevalence, associated complications and high treatment costs. Several aspects of CKD differ significantly in the Eastern European nephrology community compared with Western Europe because of different geographic, socio-economic, infrastructure, cultural and educational features. The two most frequent aetiologies of CKD, DM and hypertension, and many other predisposing factors, are more frequent in the Eastern region, resulting in more prevalent CKD Stages 3–5. Interventions may minimize the potential drawbacks of the high prevalence of CKD in Eastern Europe, which include several options at various stages of the disease, such as raising public, medical personnel and healthcare authorities awareness; early detection by screening high-risk populations; preventing progression and CKD-related complications by training health professionals and patients; promoting transplantation or home dialysis as the preferred modality; disseminating and implementing guidelines and guided therapy and encouraging/supporting country-specific observational research as well as international collaborative projects. Specific ways to significantly impact CKD-related problems in every region of Europe through education, science and networking are collaboration with non-nephrology European societies who have a common interest in CKD and its associated complications, representation through an advisory role within nephrology via national nephrology societies, contributing to the training of local nephrologists and stimulating patient-oriented research. The latter is mandatory to identify country-specific kidney disease–related priorities. Active involvement of patients in this research via collaboration with the European Kidney Patient Federation or national patient federations is imperative to ensure that projects reflect specific patient needs. ; The treatment of kidney failure is costly, therefore financial support from governments is essential to ensure that all patients receive appropriate treatment. This imposes a major burden on the economy. According to the World Bank, only 74% of governments in Eastern and Central Europe provide full support for KRT [7]. Funding of treatment in earlier stages of CKD is even more problematic because of the high number of patients and because the diagnosis may not be made in a timely manner. Although no objective data are available, it is very likely that public funding at earlier stages of CKD is less common or, at least, less comprehensive than reimbursement of KRT.

Background The ISN has stressed the need for integrated worldwide renal care. Registries will play a vital role by defining disease burden, monitoring treatment and outcomes, but vary in coverage and structure. This study describes the current scope and technical aspects of international renal registries. Methods The ISN established 'Sharing Expertise to support the set-up of Renal Registries' (SharE-RR) to support countries developing a registry (www.theisn.org/advocacy/share-rr). Surveys were developed to collect geographical and modality coverage as well models of data collection, technical, governance and funding information from national and international registries (SurveyMonkey, English language only). Piloting and iterative development was undertaken with 6 registries in 3 continents. In 2018 the survey was emailed to 126 contacts provided by members from the African, Australian and New Zealand, ERA-EDTA, Latin American and United States renal registries. Surveys were administered in batches with up to 5 reminders sent to non-responders. Respondents were asked to forward the survey to other registries covering renal replacement therapy in their country, where appropriate. Data were analysed using Microsoft Excel. National/regional survey results •91 contacts responded from 85 registries in 78 countries and 6 countries without established registries (72% response rate) •Of these 85 registries: •73 (86%) had national coverage •12 (14%) covered a region only Adults [Figure 1] •84 (99%) registries reported coverage of adults receiving haemodialysis (HD) •78 (92%) peritoneal dialysis (PD) •63 (74%) kidney transplant (Tx) •60 (71%) registries covered all three modalities and 5 (6%) covered just one Children •64 (75%) reported coverage of children receiving HD •56 (66%) PD •51 (60%) Tx Chronic/acute kidney disease •19 (22%) reported coverage of chronic kidney disease •8 (9%) acute kidney injury Data collection •44 (52%) registries used web-forms to assimilate data •31 (36%) paper-based •24 (28%) email •19 (22%) direct extraction from clinical systems •14 (16%) a secured data line •4 (5%) billing data •39 (46%) used a mixture Economy •46 (54%) responses were from high-income economies, 25 (29%) from upper-middle and 13 (15%) from lower-middle economies. Burundi was the sole low-income country •51% of the world's high-income countries, 46% of higher-middle, 28% of lower-middle and 5% of low-income countries reported a registry Funding •45 registries (53%) declared funding direct from government (61% of high-income, 48% of upper middle-income, 38% of lower middle-income and 0% of low-income responders) •Overall, 39 (46%) registries reported government as their main source of funding •Professional bodies/societies were the main funder for 18 (21%) registries and provided funding to 26 (31%) registries •7 registries (8%) reported no funding Conclusion The 2018 SharE-RR survey highlights international inequality in the ability to monitor access to, quality and outcomes of renal care. The most comprehensive registries are found in higher-income nations, which are more likely to receive government support. Scarce evidence of registry activity was found in low-income economies. Collection of data relating to individuals not receiving dialysis is rare, which precludes estimation of true disease burden. Paediatric coverage seems less complete than for adults, though the survey may not have reached all registries. Developing renal registries in resource constrained economies is critical to developing effective preventative, renal-replacement and supportive care services. The SharE-RR project has been developed to make progress in this vital area.

PURPOSE: To identify and prioritize potential topics to be addressed in the development of European multidisciplinary guidelines on the management of chronic kidney disease stage 3b-5 in older patients. METHODS: We composed a list of 47 potential guideline topics by reviewing the literature, consulting online 461 nephrologists and 107 geriatricians, and obtaining expert input. A multidisciplinary panel of twelve experts then prioritized the topics during a face-to-face consensus meeting, following a nominal group technique structure with two voting rounds. Topics were rated on a 9-point scale ranging from 1 ('not at all important') to 9 ('critically important'). RESULTS: The highest rating (median; range) was assigned to 'Screening and referral' (8.5; 2.0). Eight topics shared the second highest rating with a median priority score of 8.0 (2.0) and included 'Starting dialysis or not' and 'Accurate assessment of renal function.' 'Targets for and treatment of diabetes' received the lowest rating with (3.0; 6.0). CONCLUSIONS: This joint initiative of the European Renal Association-European Dialysis Transplant Association (ERA-EDTA) and the European Union Geriatric Medicine Society (EUGMS) prioritized the development of guidance on interdisciplinary referral of older patients with chronic kidney disease stage 3b-5. Future guidance will therefore focus on identifying prognostic scores to predict death and progression to end-stage renal disease, as well as accurate tests for assessment of renal function in older kidney patients. This will contribute to more informed treatment decision making in this growing patient population.

Rationale & Objective: Data for outcomes of patients with end-stage renal disease (ESRD) secondary to systemic sclerosis (scleroderma) requiring renal replacement therapy (RRT) are limited. We examined the incidence and prevalence of ESRD due to scleroderma in Europe and the outcomes among these patients following initiation of RRT. Study Design: Registry study of incidence and prevalence and a matched cohort study of clinical outcomes. Setting & Participants: Patients represented in any of 19 renal registries that provided data to the European Renal Association-European Dialysis and Transplant Association (ERA-EDTA) Registry between 2002 and 2013. Predictor: Scleroderma as the identified cause of ESRD. Outcomes: Incidence and prevalence of ESRD from scleroderma. Recovery from RRT dependence, patient survival after ESRD, and graft survival after kidney transplantation. Analytical Approach: Incidence and prevalence were calculated using population data from the European Union and standardized to population characteristics in 2005. Patient and graft survival were compared with 2 age- and sex-matched control groups without scleroderma: (1) diabetes mellitus as the cause of ESRD and (2) conditions other than diabetes mellitus as the cause of ESRD. Survival analyses were performed using Kaplan-Meier analysis and Cox regression. Results: 342 patients with scleroderma (0.14% of all incident RRT patients) were included. Between 2002 and 2013, the range of adjusted annual incidence and prevalence rates of RRT for ESRD due to scleroderma were 0.11 to 0.26 and 0.73 to 0.95 per million population, respectively. Recovery of independent kidney function was greatest in the scleroderma group (7.6% vs 0.7% in diabetes mellitus and 2.0% in other primary kidney diseases control group patients, both P Limitations: No data for extrarenal manifestations, treatment, or recurrence. Conclusions: Survival of patients with scleroderma who receive dialysis for more than 90 days was worse than for those with other causes of ESRD. Patient survival after transplantation was similar to that observed among patients with ESRD due to other conditions. Patients with scleroderma had a higher rate of recovery from RRT dependence than controls. ; Peer reviewed

RATIONALE & OBJECTIVE: Data for outcomes of patients with end-stage renal disease (ESRD) secondary to systemic sclerosis (scleroderma) requiring renal replacement therapy (RRT) are limited. We examined the incidence and prevalence of ESRD due to scleroderma in Europe and the outcomes among these patients following initiation of RRT. STUDY DESIGN: Registry study of incidence and prevalence and a matched cohort study of clinical outcomes. SETTING & PARTICIPANTS: Patients represented in any of 19 renal registries that provided data to the European Renal Association-European Dialysis and Transplant Association (ERA-EDTA) Registry between 2002 and 2013. PREDICTOR: Scleroderma as the identified cause of ESRD. OUTCOMES: Incidence and prevalence of ESRD from scleroderma. Recovery from RRT dependence, patient survival after ESRD, and graft survival after kidney transplantation. ANALYTICAL APPROACH: Incidence and prevalence were calculated using population data from the European Union and standardized to population characteristics in 2005. Patient and graft survival were compared with 2 age- and sex-matched control groups without scleroderma: (1) diabetes mellitus as the cause of ESRD and (2) conditions other than diabetes mellitus as the cause of ESRD. Survival analyses were performed using Kaplan-Meier analysis and Cox regression. RESULTS: 342 patients with scleroderma (0.14% of all incident RRT patients) were included. Between 2002 and 2013, the range of adjusted annual incidence and prevalence rates of RRT for ESRD due to scleroderma were 0.11 to 0.26 and 0.73 to 0.95 per million population, respectively. Recovery of independent kidney function was greatest in the scleroderma group (7.6% vs 0.7% in diabetes mellitus and 2.0% in other primary kidney diseases control group patients, both P<0.001), though time required to achieve recovery was longer. The 5-year survival probability from day 91 of RRT among patients with scleroderma was 38.9% (95% CI, 32.0%-45.8%), whereas 5-year posttransplantation patient survival and 5-year allograft survival were 88.2% (95% CI, 75.3%-94.6%) and 72.4% (95% CI, 55.0%-84.0%), respectively. Adjusted mortality from day 91 on RRT was higher among patients with scleroderma than observed in both control groups (HRs of 1.25 [95% CI, 1.05-1.48] and 2.00 [95% CI, 1.69-2.39]). In contrast, patient and graft survival after kidney transplantation did not differ between patients with scleroderma and control groups. LIMITATIONS: No data for extrarenal manifestations, treatment, or recurrence. CONCLUSIONS: Survival of patients with scleroderma who receive dialysis for more than 90 days was worse than for those with other causes of ESRD. Patient survival after transplantation was similar to that observed among patients with ESRD due to other conditions. Patients with scleroderma had a higher rate of recovery from RRT dependence than controls.

The population of patients with moderate and severe CKD is growing. Frail and older patients comprise an increasing proportion. Many studies still exclude this group, so the evidence base is limited. In 2013 the advisory board of ERBP initiated, in collaboration with European Union of Geriatric Medicine Societies (EUGMS), the development of a guideline on the management of older patients with CKD stage 3b or higher (eGFR > 45 mL/min/1.73 m(2)). The full guideline has recently been published and is freely available online and on the website of ERBP (www.european-renal-best-practice.org). This paper summarises main recommendations of the guideline and their underlying rationales.

The population of patients with moderate and severe CKD is growing. Frail and older patients comprise an increasing proportion. Many studies still exclude this group, so the evidence base is limited. In 2013 the advisory board of ERBP initiated, in collaboration with European Union of Geriatric Medicine Societies (EUGMS), the development of a guideline on the management of older patients with CKD stage 3b or higher (eGFR >45 mL/min/1.73 m2). The full guideline has recently been published and is freely available online and on the website of ERBP (www.european-renal-best-practice.org). This paper summarises main recommendations of the guideline and their underlying rationales.

Publisher Copyright: © 2021 International Society of Nephrology The authors would like to thank the patients and staff of all the dialysis and transplant units who have contributed data via their national and regional renal registries to the European Renal Association–European Dialysis and Transplant Association (ERA-EDTA) Registry. In addition, we would like to thank the persons and organizations listed in the paragraph "AFFILIATED REGISTRIES" for their contribution to the work of the ERA-EDTA Registry. The authors are grateful to all nephrologists and kidney transplant surgeons who completed "The Effect of Differing Kidney Disease Treatment Modalities and Organ Donation and Transplantation Practices on Health Expenditure and Patient Outcomes" Nephrologist survey. In addition, we would like to thank all colleagues who pretested the survey, provided advice about the ethical approval in their country, or helped to distribute the survey in their country or personal network. This study was funded by the European Union (grant PP-01-2016) and ERA-EDTA. Among others, we are grateful for support from Austria (R. Kramar and R. Oberbauer), Belarus, Belgium (F. Collart), Croatia (I. Bubic, M. Bušić, M. Dragović, and S. Živčić Ćosić), Cyprus, Czech Republic (I. Rychlik and V. Tesař), Denmark (J. Heaf and S. Schwartz Sørensen), Estonia, Finland (P. Finne and V. Rauta), Germany (M. Lingemann and C. Wanner), Greece (T. Apostolou, E. Dounousi, and G. Moustakas), Hungary (O. Deme, S. Mihaly, and G. Reúsz), Ireland (W. Plant), Italy (G. Brunori, C. Carella, P. di Ciaccio, and M. Postorino), Latvia (A. Petersons), Malta (J. Buttigieg), Moldova (A. Tanase), the Netherlands (F. van Ittersum and S. Logtenberg), North Macedonia (G. Spasovski), Norway (A. Åsberg, M. Dahl Solbu, and A. Varberg Reisæter), Poland (S. Dudzicz and M. Nowicki), Romania (L. Gârneaţă and L. Tuta), Russia (H. Zakharova), Serbia (R. Naumovic), Slovakia (V. Spustova), Slovenia (J. Buturovic Ponikvar and D. Kovac), Spain (C. Alberich, J. Comas, M. del Pino y Pino, M. Ferrer Alamar, and B. Mahillo), Sweden (M. Evans), Switzerland (P. Ambühl and U. Huynh-Do), Turkey (M. Arici), Ukraine (M. Kolesnyk), and United Kingdom (S. Fraser and G. Lipkin); and from the following organizations: EKITA (I. Bellini and R. Langer), ERA-EDTA (F. Trebelli), EuroPD (S. Davies), and Eurotransplant (P. Branger, M. van Meel, and U. Samuel). Affiliated registries. Albanian Renal Registry (M. Barbullushi, A. Idrizi, and E. Bolleku Likaj); Austrian Dialysis and Transplant Registry (OEDTR) (R. Kramar); Belarus Renal Registry (K.S. Komissarov, K.S. Kamisarau, and A.V. Kalachyk); Dutch-speaking Belgian Society of Nephrology (NBVN) (M. Couttenye, F. Schroven, and J. De Meester); French-speaking Belgian Society of Nephrology (GNFB) (J.M. des Grottes and F. Collart); Renal Registry Bosnia and Herzegovina (H. Resić, Z. Stipancic, and N. Petkovic); Bulgaria (E.S. Vazelov and I. Velinova); Croatian Registry of renal replacement therapy (CRRRT) (I. Bubić and M. Knotek); Cyprus Renal Registry (K. Ioannou and all of the renal units providing data); Czech Republic: Registry of Dialysis Patients (RDP) (I. Rychlík, J. Potucek, and F. Lopot); Danish Nephrology Registry (DNS) (J.G. Heaf); Estonian Society of Nephrology (Ü. Pechter, K. Lilienthal, and M. Rosenberg); Finnish Registry for Kidney Diseases (P. Finne, A. Pylsy, and P.H. Groop); France: The Epidemiology and Information Network in Nephrology (REIN) (M. Lassalle and C. Couchoud); Georgian Renal Registry (N. Kantaria and Dialysis Nephrology and Transplantation Union of Georgia); Hellenic Renal Registry (N. Afentakis); Icelandic ESRD Registry (R. Palsson); Israel National Registry of Renal Replacement Therapy (R. Dichtiar, T. Shohat, and E. Golan); Italian Registry of Dialysis and Transplantation (RIDT) (A. Limido, M. Nordio, and M. Postorino); Latvian Renal Registry (H. Cernevskis, V. Kuzema, and A. Silda); Lithuanian Renal Registry (I.A. Bumblyte, V. Vainauskas, and E. Žiginskienė); Macedonian Renal Registry (M. Nedelkovska, N. Dimitriova, and O. Stojceva-Taneva); Norwegian Renal Registry (T. Leivestad, A.V. Reisæter, and A. Åsberg); Polish Renal Registry (G. Korejwo, A. Dębska-Ślizień, and R. Gellert); Portuguese Renal Registry (F. Macário and A. Ferreira); Romanian Renal Registry (RRR) (G. Mircescu, L. Garneata, and E. Podgoreanu); Russian Renal Registry (N. Tomilina, A. Andrusev, and H. Zakharova); Renal Registry in Serbia (N. Maksimovic, R. Naumovic, all of the Serbian renal units, and the Serbian Society of Nephrology); Slovakian Renal Registry (V. Spustová, I. Lajdová, and M. Karolyova); Spanish RRT National Registry at Organización Nacional de Trasplantes (ONT), Spanish Regional Registries, Spanish Society of Nephrology (SEN), and the regional registries of Andalusia Sistema de Información de la Coordinación Autonómica de Trasplantes de Andalucia (SICATA) (P. Castro de la Nuez [on behalf of all users of SICATA]), Aragon (F. Arribas Monzón, J.M. Abad Diez, and J.I. Sanchez Miret), Asturias (R. Alonso de la Torre, J.R. Quirós, and Registro de Enfermos Renales Crónicos de Asturias [RERCA] Working Group), Basque country (UNIPAR) (Á. Magaz, J. Aranzabal, M. Rodrigo, and I. Moina), Cantabria (J.C. Ruiz San Millán, O. Garcia Ruiz, and C. Piñera Haces), Castile and León (M.A. Palencia García), Castile–La Mancha (G. Gutiérrez Ávila and I. Moreno Alía), Catalonia (RMRC) (E. Arcos, J. Comas, and J. Tort), Extremadura (J.M. Ramos Aceitero and M.A. García Bazaga), Galicia (E. Bouzas-Caamaño), Community of Madrid (M.I. Aparicio de Madre), Renal Registry of the Region of Murcia (C. Santiuste de Pablos and I. Marín Sánchez), Navarre (M.F. Slon Roblero, J. Manrique Escola, and J. Arteaga Coloma), and the Valencian region (REMRENAL) (M. Ferrer Alamar, N. Fuster Camarena, and J. Pérez Penadés); Swedish Renal Registry (SNR) (K.G. Prütz, M. Stendahl, M. Evans, S. Schön, T. Lundgren, and M. Segelmark); Swiss Dialysis Registry (P. Ambühl and R. Winzeler); Dutch Renal Registry (RENINE) (L. Heuveling, S. Vogelaar, and M. Hemmelder); Tunisia, Sfax region (F. Jarraya and D. Zalila); Registry of the Nephrology, Dialysis and Transplantation in Turkey (TSNNR) (G. Süleymanlar, N. Seyahi, and K. Ateş); Ukrainian Renal Data System (URDS) (M. Kolesnyk, S. Nikolaenko, and O. Razvazhaieva); UK Renal Registry (UKRR) (all the staff of the UKRR and of the renal units submitting data); and Scottish Renal Registry (SRR) (all of the Scottish renal units). ERA-EDTA Registry committee members. C. Zoccali, Italy (ERA-EDTA President); Z.A. Massy, France (Chairman); F.J. Caskey, United Kingdom; C. Couchoud, France; M. Evans, Sweden; P. Finne, Finland; J.W. Groothoff, the Netherlands; J. Harambat, France; J.G. Heaf, Denmark; F. Jarraya, Tunisia; M. Nordio, Italy; and I. Rychlik, Czech Republic. ; The aims of this study were to determine the frequency of dialysis and kidney transplantation and to estimate the regularity of comprehensive conservative management (CCM) for patients with kidney failure in Europe. This study uses data from the ERA-EDTA Registry. Additionally, our study included supplemental data from Armenia, Germany, Hungary, Ireland, Kosovo, Luxembourg, Malta, Moldova, Montenegro, Slovenia and additional data from Israel, Italy, Slovakia using other information sources. Through an online survey, responding nephrologists estimated the frequency of CCM (i.e. planned holistic care instead of kidney replacement therapy) in 33 countries. In 2016, the overall incidence of replacement therapy for kidney failure was 132 per million population (pmp), varying from 29 (Ukraine) to 251 pmp (Greece). On 31 December 2016, the overall prevalence of kidney replacement therapy was 985 pmp, ranging from 188 (Ukraine) to 1906 pmp (Portugal). The prevalence of peritoneal dialysis (114 pmp) and home hemodialysis (28 pmp) was highest in Cyprus and Denmark respectively. The kidney transplantation rate was nearly zero in some countries and highest in Spain (64 pmp). In 28 countries with five or more responding nephrologists, the median percentage of candidates for kidney replacement therapy who were offered CCM in 2018 varied between none (Slovakia and Slovenia) and 20% (Finland) whereas the median prevalence of CCM varied between none (Slovenia) and 15% (Hungary). Thus, the substantial differences across Europe in the frequency of kidney replacement therapy and CCM indicate the need for improvement in access to various treatment options for patients with kidney failure. ; Peer reviewed

The global nephrology community recognizes the need for a cohesive strategy to address the growing problem of end-stage kidney disease (ESKD). In March 2018, the International Society of Nephrology hosted a summit on integrated ESKD care, including 92 individuals from around the globe with diverse expertise and professional backgrounds. The attendees were from 41 countries, including 16 participants from 11 low- and lower-middle–income countries. The purpose was to develop a strategic plan to improve worldwide access to integrated ESKD care, by identifying and prioritizing key activities across 8 themes: (i) estimates of ESKD burden and treatment coverage, (ii) advocacy, (iii) education and training/workforce, (iv) financing/funding models, (v) ethics, (vi) dialysis, (vii) transplantation, and (viii) conservative care. Action plans with prioritized lists of goals, activities, and key deliverables, and an overarching performance framework were developed for each theme. Examples of these key deliverables include improved data availability, integration of core registry measures and analysis to inform development of health care policy; a framework for advocacy; improved and continued stakeholder engagement; improved workforce training; equitable, efficient, and cost-effective funding models; greater understanding and greater application of ethical principles in practice and policy; definition and application of standards for safe and sustainable dialysis treatment and a set of measurable quality parameters; and integration of dialysis, transplantation, and comprehensive conservative care as ESKD treatment options within the context of overall health priorities. Intended users of the action plans include clinicians, patients and their families, scientists, industry partners, government decision makers, and advocacy organizations. Implementation of this integrated and comprehensive plan is intended to improve quality and access to care and thereby reduce serious health-related suffering of adults and children affected ...