Lessons learned from the ESPN/ERA-EDTA Registry.

End-stage renal disease (ESRD) in children is a medically challenging condition. Due to its rarity and special features, methodologically sound collaborative studies are required. In 2007, a new European registry of pediatric renal replacement therapy (RRT), the ESPN/ERA-EDTA Registry, was launched.

Why creating standardized core outcome sets for chronic kidney disease will improve clinical practice.

Chronic kidney disease (CKD) is common and is associated with increased mortality, morbidity and cost. However, insufficient high-quality trial data are available to answer many relevant clinical questions in this field. In addition, a wide range of variable outcomes are used in studies, and often they are incompletely reported.

Differences in survival on chronic dialysis treatment between ethnic groups in Denmark: a population-wide, national cohort study.

Background: In Western countries, black and Asian dialysis patients experience better survival compared with white patients. The aim of this study is to compare the survival of native Danish dialysis patients with that of dialysis patients originating from other countries and to explore the association between the duration of residence in Denmark before the start of dialysis and the mortality on dialysis.

Methods: We performed a population-wide national cohort study of incident chronic dialysis patients in Denmark (≥18 years old) who started dialysis between 1995 and 2010.

Infection-related hospitalizations over 30 years of follow-up in patients starting renal replacement therapy at pediatric age.

Background: Pediatric renal replacement therapy (RRT) patients surviving long-term are at a much higher risk of mortality compared with the age-matched general population. Recently, we demonstrated a transition from cardiovascular disease to infection as the main cause of death in a long-term follow-up study of pediatric RRT. Here, we explore the burden of infections requiring hospitalization over 30 years of follow-up on RRT.

Long-Term Risk of Cancer in Survivors of Pediatric ESRD.

Background And Objectives: ESRD is associated with an increased risk of malignancies. We analyzed the incidence of cancer in patients with pediatric ESRD after long-term follow-up.

Design, Setting, Participants, & Measurements: All Dutch patients born before 1979 who were transplanted at age <15 years old in 1972-1992 were followed until 2010.

Inflammation, Endothelial Dysfunction and Increased Left Ventricular Mass in Chronic Kidney Disease (CKD) Patients: A Longitudinal Study.

Introduction: Within this longitudinal study we investigated the association of inflammation markers C-reactive protein (CRP), interleukin-6 (IL-6) and tumor necrosis factor-α (TNFα) and endothelial dysfunction markers intercellular adhesion molecule-1 (ICAM-1) and vascular cell adhesion molecule-1 (VCAM-1) with left ventricular mass indexed for height(2.71) (LVMI) in hypertensive predialysis CKD patients.

Material And Methods: From 2004 to 2005, 182 incident consecutive adult patients from the outpatient CKD clinics of two hospitals in Greece with CKD and hypertension or using antihypertensive medication, were included.

Anemia in children following renal transplantation-results from the ESPN/ERA-EDTA Registry.

Background: Our aim was to determine the prevalence of sub-target hemoglobin (Hb) levels in children with a renal allograft and to identify potential determinants associated with these Hb levels.

Methods: Data from 3669 children with a functioning renal allograft, aged <18 years between 1 January 2000 and 31 December 2012, from 20 European countries were retrieved from the ESPN/ERA-EDTA Registry, providing 16,170 Hb measurements.

Results: According to the NKF/KDOQI classification and the UK-NICE guidelines, 49.

The changing trends and outcomes in renal replacement therapy: data from the ERA-EDTA Registry.

Background: This study examines the time trends in incidence, prevalence, patient and kidney allograft survival and causes of death (COD) in patients receiving renal replacement therapy (RRT) in Europe.

Methods: Eighteen national or regional renal registries providing data to the European Renal Association-European Dialysis and Transplant Association Registry between 1998 and 2011 were included. Incidence and prevalence time trends between 2001 and 2011 were studied with Joinpoint and Poisson regression.

Identification of subgroups by risk of graft failure after paediatric renal transplantation: application of survival tree models on the ESPN/ERA-EDTA Registry.

Background: Identification of patient groups by risk of renal graft loss might be helpful for accurate patient counselling and clinical decision-making. Survival tree models are an alternative statistical approach to identify subgroups, offering cut-off points for covariates and an easy-to-interpret representation.

Methods: Within the European Society of Pediatric Nephrology/European Renal Association-European Dialysis and Transplant Association (ESPN/ERA-EDTA) Registry data we identified paediatric patient groups with specific profiles for 5-year renal graft survival.

Trends in dialysis modality choice and related patient survival in the ERA-EDTA Registry over a 20-year period.

Background: Although previous studies suggest similar patient survival for peritoneal dialysis (PD) and haemodialysis (HD), PD use has decreased worldwide. We aimed to study trends in the choice of first dialysis modality and relate these to variation in patient and technique survival and kidney transplant rates in Europe over the last 20 years.

Methods: We used data from 196 076 patients within the European Renal Association-European Dialysis and Transplant Association (ERA-EDTA) Registry who started renal replacement therapy (RRT) between 1993 and 2012.

Nephrologists' perceptions regarding dialysis withdrawal and palliative care in Europe: lessons from a European Renal Best Practice survey.

Background: There is a variation in dialysis withdrawal rates, but reasons for this variation across European countries are largely unknown. We therefore surveyed nephrologists' perceptions of factors concerning dialysis withdrawal and palliative care and explored relationships between these perceptions and reports of whether withdrawal actually occurred in practice.

Methods: We developed a 33-item electronic survey, disseminated via an email blast to all European Renal Association-European Dialysis and Transplant Association (ERA-EDTA) members.

Methodology used in studies reporting chronic kidney disease prevalence: a systematic literature review.

Background: Many publications report the prevalence of chronic kidney disease (CKD) in the general population. Comparisons across studies are hampered as CKD prevalence estimations are influenced by study population characteristics and laboratory methods.

Methods: For this systematic review, two researchers independently searched PubMed, MEDLINE and EMBASE to identify all original research articles that were published between 1 January 2003 and 1 November 2014 reporting the prevalence of CKD in the European adult general population.

Prediction of prevalence of chronic kidney disease in diabetic patients in countries of the European Union up to 2025.

Background: Diabetes and chronic kidney disease (CKD) are a growing burden for health-care systems. The prevalence of diabetes has increased constantly during the last decade, although a slight flattening of end-stage renal disease as a result of diabetes has been observed recently in some European countries. In this study, we project the prevalence of CKD in patients with diabetes in European countries up to the year 2025.

A multifaceted feedback strategy alone does not improve the adherence to organizational guideline-based standards: a cluster randomized trial in intensive care.

Background: Organizational data such as bed occupancy rate and nurse-to-patient ratio are related to clinical outcomes and to the efficient use of intensive care unit (ICU) resources. Standards for these performance indicators are provided in guidelines. We studied the effects of a multifaceted feedback strategy to improve the adherence to these standards.

Fifty years of ERA-EDTA Registry-a registry in transition.

In 1964 the ERA-EDTA Registry was started as one of the first renal registries in the world. This meeting report describes how this European registry has developed over the 50 years of its existence. Where the first report presented patient numbers, nowadays the Registry acts as a platform for collaborative renal research in Europe.

Renal replacement therapy in Europe: a summary of the 2012 ERA-EDTA Registry Annual Report.

Background: This article summarizes the 2012 European Renal Association-European Dialysis and Transplant Association Registry Annual Report (available at www.era-edta-reg.org) with a specific focus on older patients (defined as ≥65 years).

How to routinely collect data on patient-reported outcome and experience measures in renal registries in Europe: an expert consensus meeting.

Despite the potential for patient-reported outcome measures (PROMs) and experience measures (PREMs) to enhance understanding of patient experiences and outcomes they have not, to date, been widely incorporated into renal registry datasets. This report summarizes the main points learned from an ERA-EDTA QUEST-funded consensus meeting on how to routinely collect PROMs and PREMs in renal registries in Europe. In preparation for the meeting, we surveyed all European renal registries to establish current or planned efforts to collect PROMs/PREMs.

Characteristics and Outcomes of Granulomatosis With Polyangiitis (Wegener) and Microscopic Polyangiitis Requiring Renal Replacement Therapy: Results From the European Renal Association-European Dialysis and Transplant Association Registry.

Background: This study describes the incidence and outcomes of European patients requiring renal replacement therapy (RRT) for kidney failure due to antineutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV).

Study Design: Cohort study.

Setting & Participants: 12 renal registries providing individual RRT patient data to the European Renal Association-European Dialysis and Transplant Association (ERA-EDTA) Registry in 1993-2012 participated.

Calculating the Rate of Senescence From Mortality Data: An Analysis of Data From the ERA-EDTA Registry.

The rate of senescence can be inferred from the acceleration by which mortality rates increase over age. Such a senescence rate is generally estimated from parameters of a mathematical model fitted to these mortality rates. However, such models have limitations and underlying assumptions.

Lag-censoring analysis: lights and shades.

'Intention-to-treat' (ITT) analysis is the recommended approach for the data analysis of randomized clinical trials (RCT). ITT analysis considers patients in the active or in the control arm as originally allocated by randomization, independently of their actual adherence to the assigned treatment. Lag-censoring analysis is a statistical method which takes into account the compliance of patients to the study protocol because the investigator censors a patient when or shortly after he/she stops the treatment being tested.

Renal replacement therapy in Ukraine: epidemiology and international comparisons.

Background: Little is known about the status of renal replacement therapy (RRT) in the post-Soviet countries. We therefore investigated the epidemiology and treatment outcomes of RRT in Ukrainian patients and put the results into an international perspective.

Methods: Data from the Ukrainian National Renal Registry for patients on RRT between 1 January 2010 and 31 December 2012 were selected.

Renal replacement therapy in Europe: a summary of the 2011 ERA-EDTA Registry Annual Report.

Background: This article provides a summary of the 2011 ERA-EDTA Registry Annual Report (available at www.era-edta-reg.org).