The ERA-EDTA Registry Annual Report 2017: a summary

Kramer, Anneke; Boenink, Rianne; Noordzij, Marlies; Bosdriesz, Jizzo R.; Stel, Vianda S.; Beltrán, Palma; Ruiz, Juan Carlos; Seyahi, Nurhan; Farnés, Jordi Comas; Stendahl, Maria; Gârneaţă, Liliana; Winzeler, Rebecca; Golan, Eliezer; Lopot, František; Korejwo, Grzegorz; Bonthuis, Marjolein; Lassalle, Mathilde; Roblero, María Fernanda Slon; Kuzema, Viktorija; Hommel, Kristine; Stojceva-Taneva, Olivera; Åsberg, Anders; Kramar, Reinhard; Hemmelder, Marc H; Meester, Johan De; Vazelov, Evgueniy; Andrusev, Anton; Nuez, Pablo Castro de la; Helve, Jaakko; Komissarov, Kirill; Casula, Anna; Magaz, Ángela; Pablos, Carmen Santiuste de; Bubić, Ivan; Traynor, Jamie P.; Ioannou, Kyriakos; Idrizi, Alma; Pálsson, Runólfur; Grottes, J M des; Spustová, Viera; Tolaj-Avdiu, Miloreta; Jarraya, F.; Nordio, Maurizio; Žiginskienė, Edita; Massy, Ziad A.; Jager, Kitty J.

doi:10.1093/ckj/sfaa048

Cited by 75 publications

(70 citation statements)

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“…Ultimately, a significant reduction in the barriers to participation in NAPRTCS, IROC, and any number of other pediatric nephrology networks will require better alignment and partnerships that allow networks to maintain identity while leveraging common resources and infrastructure. Indeed, in addition to NAPRTCS and IROC discussed in this review, there are a number of networks internationally working to improve the lives of children with a kidney transplant in similar fashion 29‐32 . Each is building out specific portions of the Learning Healthcare System model for their patients and is therefore facing similar challenges and opportunities.…”

Section: Discussionmentioning

confidence: 99%

Multicenter data to improve health for pediatric renal transplant recipients in North America: Complementary approaches of NAPRTCS and IROC

Hooper

Misurac

Blydt-Hansen

et al. 2020

Pediatric Transplantation

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Kidney transplantation increases life expectancy and improves quality of life for children with end‐stage kidney disease, yet sequelae of transplantation and treatment make it difficult for transplant recipients to enjoy health and quality of life similar to their healthy peers. The NAPRTCS network was among the first to use multicenter data to inform improvements in care and outcomes for children with a kidney transplant through observational research. Now, with new technologies and unprecedented access to data, it is possible to create learning health systems as envisioned by the US National Academy of Sciences to seamlessly integrate research and continuous improvement of clinical care. In this review, we present two pre‐eminent North American networks focused on using multicenter data to drive improved care and outcomes for children with a kidney transplant. Whereas, for the past 30 years NAPRTCS has focused on discovery of best practices through observational research and clinical trials, the Improving Renal Outcomes Collaborative, established in 2016, engages patients, families, clinicians, and researchers in redesigning the healthcare delivery system to enable practice change and continuous improvement of health outcomes. We discuss the history and past contributions of these networks, as well as current activities, barriers, and potential future solutions to more fully realize the vision of a true learning health system for pediatric kidney transplant recipients.

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Section: Discussionmentioning

confidence: 99%

Multicenter data to improve health for pediatric renal transplant recipients in North America: Complementary approaches of NAPRTCS and IROC

Hooper

Misurac

Blydt-Hansen

et al. 2020

Pediatric Transplantation

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“…Portugal has one of the highest unadjusted incidences of ESRD among European countries 8 . About 64% of the incident dialysis patients in 2018 were over 65 years with a mean age of 67.2 years for prevalent patients 24 , above the mean age of the European registry 8 .…”

Section: Discussionmentioning

confidence: 99%

“…Portugal has the one of the highest incidences and prevalence of ESRD in the world 8,9 . Considering the need to develop prognostic models adapted to the specificities of each population, we have recently developed a prognostic score for predicting early death in elderly ESRD patients initiating dialysis in a cohort of Portuguese patients 10 .…”

Section: Introductionmentioning

confidence: 99%

Untitled

2020

pjnh

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Background and objectives: To evaluate RRT benefits and risks and to inform patients and their families about ESRD treatment options, we have developed a prognostic score to predict 6-month mortality in elderly ESRD patients initiating dialysis. Five independent predictors were identified and a point system was constructed: age 75 years or older (2 points), coronary artery disease (2 points), cerebrovascular disease with hemiplegia (2 points), time of nephrology care before dialysis [< 3.0 months (2 points); ≥ 3 to < 12 months (1 point)], serum albumin levels [3.0-3.49 g/dL (1 point); < 3.0 g/dL (2 points)]. Model performance was good in both discrimination and internal validation. Before adopting our risk score into practice, our aim is to externally validate this initial predictive model by assessing its performance on a new data set. Methods: We apply the predictive score developed in a cohort of CKD patients, aged 65 years and over who started dialysis between 2009 and 2016, to an independent cohort of ESRD patients, aged 65 years and over who started dialysis between 2017 and 2019, in our Nephrology department. The performance of the prediction equation created in development cohort, was assessed using discrimination and calibration metrics in the validation cohort. Results: Our validation study cohort included 168 individuals, with a mortality rate of 12.5% (n=21) within 6-months of dialysis initiation. Model performance in the validation cohort had an acceptable discrimination [AUC of 0.79; (95% confidence interval, 0.70 to 0.88)]. The Hosmer and Lemeshow goodness-of-fit test was not statistically significant, indicating good calibration of the model (χ 2 , 5 degrees of freedom = 2.311; P = 0.805). Conclusions: Our predictive simple score based on readily available clinical and laboratory data demonstrates a good performance when externally validated, namely with respect to discrimination and calibration. Model validation is crucial for adequately informing patients and their families about ESRD treatment options and providing a more patient-centered overall approach to care. Before we start general implementation in clinical practice, our score needs further validation in larger patient cohorts.

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“…This issue of Clinical Kidney Journal contains the summary of the 2017 Annual Report of the ERA-EDTA Registry [ 1 ]. In recent years, hypertension has been the second or third most common cause of renal replacement therapy (RRT) in Europe, tied with glomerulonephritis [ 1–3 ]. Hypertensive nephrosclerosis is also the second most frequent cause of RRT in the USA and the third in Japan [ 4 , 5 ] ( Figure 1 ).…”

Section: Hypertensive Kidney Disease As the Second Most Common Nephromentioning

confidence: 99%

Hypertensive nephropathy: a major roadblock hindering the advance of precision nephrology

Carriazo

Pérez-Gómez

Ortíz

2020

Clinical Kidney Journal

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In the 2017 Annual Report of the ERA-EDTA Registry, hypertension continues to be the second or third most common cause of renal replacement therapy (RRT) in Europe, tied with glomerulonephritis. There is, however, one little issue: hypertension-induced end-stage renal disease (ESRD) might not exist at all as currently understood, that is, as hypertensive nephrosclerosis. In this regard, the incidence of RRT due to hypertensive nephropathy is related to the incidence of other causes of ESRD but not to the burden of hypertension per country. The current definition of hypertensive nephropathy is non-specific, outdated and only allows a delayed diagnosis by exclusion. It is not helpful that 80% of chronic kidney disease patients develop hypertension and kidney biopsy has no findings specific for hypertensive nephropathy. There is an urgent need to redefine the concept of hypertensive nephropathy with a clear and comprehensive set of criteria that at least should indicate how other nephropathies, including familial nephropathies, should be excluded. Correct causality assessment and aetiology-based therapy is a key to the progress of nephrology and it should no longer be accepted that ‘hypertensive nephropathy’ serves to disguise a suboptimal diagnostic workup. A diagnosis of nephropathy of unknown cause would be more honest when the full range of alternative aetiological diagnoses is not explored.

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The ERA-EDTA Registry Annual Report 2017: a summary

Cited by 75 publications

References 1 publication

Multicenter data to improve health for pediatric renal transplant recipients in North America: Complementary approaches of NAPRTCS and IROC

Multicenter data to improve health for pediatric renal transplant recipients in North America: Complementary approaches of NAPRTCS and IROC

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Hypertensive nephropathy: a major roadblock hindering the advance of precision nephrology

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