2015
DOI: 10.1055/s-0035-1569477
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The Canadian Pediatric Surgery Network (CAPSNet): Lessons Learned from a National Registry Devoted to the Study of Congenital Diaphragmatic Hernia and Gastroschisis

Abstract: The Canadian Pediatric Surgery Network (CAPSNet) was created in 2005 by a geographically representative, multidisciplinary group of clinicians and researchers with the intent of establishing a national research registry for gastroschisis (GS) and congenital diaphragmatic hernia (CDH). Since then, CAPSNet has used this registry and its 16-center network to make contributions to the knowledge base informing best practices for GS and CDH care. More recently, CAPSNet has expanded its focus to include quality assur… Show more

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Cited by 9 publications
(4 citation statements)
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“…This was observed both in the general rate reported by the CCASS ( Public Health Agency of Canada and Health Canada, 2013 ) and in the age-adjusted and age-unadjusted data reported by ( Bassil et al, 2016 ). This result is consistent both with the uniform findings of all seven studies which have examined this question ( Torfs et al, 1994 ; Werler et al, 2003 ; Forrester and Merz, 2007 ; Draper et al, 2008 ; van Gelder et al, 2009a ; David et al, 2014 ; Skarsgard et al, 2015 ) including several prior reports from the Canadian Surgical Surveillance Group on this subject ( Alshehri et al, 2013 ; Butler et al, 2015 ; Skarsgard et al, 2015 ; Bassil et al, 2016 ; Puligandla et al, 2017 ) presumably reporting on cases which overlap in part with some of the subjects reported herein by CCASS ( Moore et al, 2013 ). This uniformity of the literature in this subject is indeed noteworthy.…”
Section: Discussionsupporting
confidence: 87%
“…This was observed both in the general rate reported by the CCASS ( Public Health Agency of Canada and Health Canada, 2013 ) and in the age-adjusted and age-unadjusted data reported by ( Bassil et al, 2016 ). This result is consistent both with the uniform findings of all seven studies which have examined this question ( Torfs et al, 1994 ; Werler et al, 2003 ; Forrester and Merz, 2007 ; Draper et al, 2008 ; van Gelder et al, 2009a ; David et al, 2014 ; Skarsgard et al, 2015 ) including several prior reports from the Canadian Surgical Surveillance Group on this subject ( Alshehri et al, 2013 ; Butler et al, 2015 ; Skarsgard et al, 2015 ; Bassil et al, 2016 ; Puligandla et al, 2017 ) presumably reporting on cases which overlap in part with some of the subjects reported herein by CCASS ( Moore et al, 2013 ). This uniformity of the literature in this subject is indeed noteworthy.…”
Section: Discussionsupporting
confidence: 87%
“…The logical step would be to design national and international registries that may be instrumental in centralizing and collecting data to give an overall picture of the disease, which could be the basis for guidelines formation and subsequent prospective studies and randomized trials, and provide quality indicators that may be used to determine hospitals' performance and best practice variations. The importance of pediatric collaborative networks for the progress in clinical care of patients with rare disorders has been already pointed out (17)(18)(19)(20). Accordingly, the European Union is currently making an effort to develop reference networks (ERN) of expert institutions for the treatment of rare disorders, among whom ERNICA will focus specifically on congenital gastro-intestinal disorders, including EA/TEF 1 .…”
Section: Discussionmentioning
confidence: 99%
“…Quality of pediatric surgery in Germany: Although Quality Reports of the Hospitals are required from all hospitals in Germany, the reports provide data on the quantity of care rather than the quality of care. Registries that cover a special aspect of pediatric surgery and the whole country have been established, for example, in Canada, 18 United Kingdom, 19 and France. 20 These registries are lacking in Germany, except for oncology.…”
Section: Centralization and Full Coverage Of Pediatric Surgery In Germentioning
confidence: 99%