Collaborative Brazilian Pediatric Renal Transplant Registry (CoBrazPed-RTx): A Report From 2004 to 2013

Garcia, Clotilde Druck; Pestana, José Medina; Martins, Suelen Bianca Stopa; Nogueira, Paulo Koch; Barros, V.R; Rohde, R.; Camargo, Maria Fernanda Carvalho de; Feltran, Luciana de Santis; Esmeraldo, Ronaldo M.; Carvalho, R.; Schvartsman, Benita Galassi Soares; Vaisbich, María Helena; Watanabe, Andréa; Cunha, Mariana Faucz Munhoz da; Meneses, Rejane de Paula; Prates, Liliane Cury; Belangero, Vera Maria Santoro; Palma, Lílian Monteiro Pereira; CARVALHO, DAVI PEIXOTO CRAVEIRO; Matuk, T.; Benini, Vanda; Laranjo, Sérgio; Abbud-Filho, Mário; Charpiot, Ida Maria Maximina Fernandes; Ramalho, Horácio José; Lima, Everton Emanuel Campos de; Penido, John R.F.; Andrade, Cléverton Roberto de; Gesteira, Mário; Tavares, Marcelo de Sousa; Penido, Maria Goretti Moreira Guimarães; Souza, V. de; Wagner, Martin

doi:10.1016/j.transproceed.2015.03.020

Cited by 16 publications

(10 citation statements)

References 5 publications

(5 reference 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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“…The percentage of males in the registry, 55.8%, was similar to our 2015 report (56%) and to the European registry (60.2%). 2,3 The most common underlying renal etiology was CAKUT (40.5%, n = 1,113) and glomerulopathy (28%, n = 762)-FSGS accounted for 13.0% (N = 59). CAKUT accounted for the largest proportion of primary diagnosis in all ages.…”

Section: Re Sultsmentioning

confidence: 99%

“…The CoBrazPed-RTx had its results initially published in 2015. 2 The aim of this study was to update the demographic characteristics of patient and graft survival rates and the causes of death and graft loss in the last 14 years among the 13 CoBrazPed-RTx participating centers carrying out pediatric transplants in Brazil.…”

Section: Introductionmentioning

confidence: 99%

“…Since 2004, a group of pediatric transplant physicians started a multicenter collaborative study aiming to analyze, report, and share the results of pediatric kidney transplantation in Brazil. The CoBrazPed‐RTx had its results initially published in 2015 . The aim of this study was to update the demographic characteristics of patient and graft survival rates and the causes of death and graft loss in the last 14 years among the 13 CoBrazPed‐RTx participating centers carrying out pediatric transplants in Brazil.…”

Section: Introductionmentioning

confidence: 99%

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Collaborative Brazilian pediatric renal transplant registry (CoBrazPed‐RTx): A report from 2004 to 2018

Souza

Garcia

Pestana

et al. 2019

Pediatric Transplantation

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The Brazilian collaborative registry for pediatric renal transplantation began in 2004 as a multicenter initiative aimed at analyzing, reporting, and disseminating the results of pediatric renal transplantation in Brazil. Data from all pediatric renal transplants performed from January 2004 to May 2018 at the 13 participating centers were analyzed. A total of 2744 pediatric renal transplants were performed in the thirteen participating centers. The median age at transplantation was 12.2 years, with the majority being male recipients (56%). The main underlying diseases were CAKUT (40.5%) and glomerulopathy (28%). 1981 (72%) of the grafts were from deceased donors (DD). Graft survival at one year (censored by death) was 94% in the live donor group (LD) and 91% in the DD group (log‐rank test P < 0.01). The patient’s survival at one and 5 years was 97% and 95% for the LD group and 96% and 93% for the DD group (log‐rank test P = 0.02). The graft loss rate was 19% (n = 517), more frequently caused by vascular thrombosis (n = 102) and chronic graft nephropathy (n = 90). DD recipients had 1.6 (1.0‐2.2) times greater chance of death and 1.5 (1.2‐1.8) times greater chance of graft loss compared to LD recipients. The mortality rate was 5.4% (n = 148), mainly due to infection (n = 69) and cardiovascular disease (n = 28). The results of this collaborative pediatric renal transplant record are comparable to other international registries, although we still have a high infection rate as a cause of death.

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“…In the developing world, incidence rates of transplantation depend on country income even more. Pediatric transplant rates are <1-2 pmarp in Pakistan, Arab countries, and South Africa, and <4 pmarp in Brazil, suggesting that a limited number of ESRD children have access to transplantation [20,[28][29][30]. Transplantation outcome is generally poorer in low-income countries, although a small minority of referral centers in these countries also show excellent results [28].…”

Section: Inequalities In Access To Transplantationmentioning

confidence: 99%

Inequalities in access to pediatric ESRD care: a global health challenge

Harambat

Ekulu

2015

Pediatr Nephrol

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The increasing attention paid to chronic kidney disease (CKD) as a major cause of mortality and disability, as well as the advances in management of CKD in children, have created a growing demand for pediatric renal replacement therapy (RRT) worldwide. A study by Koch Nogueira and colleagues of children on the transplant waiting list showed large disparities in access to pediatric kidney transplantation between regions in Brazil. This finding raises a wider question about inequalities in access to CKD care in children. Here we review the available data on the global burden of end-stage renal disease in children, the need for pediatric RRT, and its actual provision worldwide. We focus on inequalities in access to renal care for children that currently exist between and within countries. Reduction in worldwide inequalities in access to RRT in children remains a challenge, which requires greater awareness and effective interventions and policies.

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Collaborative Brazilian Pediatric Renal Transplant Registry (CoBrazPed-RTx): A Report From 2004 to 2013

Cited by 16 publications

References 5 publications

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

Collaborative Brazilian pediatric renal transplant registry (CoBrazPed‐RTx): A report from 2004 to 2018

Inequalities in access to pediatric ESRD care: a global health challenge

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