Isabel C. Hageman , Misel Trajanovska , Iris A.L.M. van Rooij , Ivo de Blaauw , Sebastian K. King
{"title":"澳大利亚-新西兰先天性结直肠登记处（ANZCCoRe）：通过合作推动创新","authors":"Isabel C. Hageman , Misel Trajanovska , Iris A.L.M. van Rooij , Ivo de Blaauw , Sebastian K. King","doi":"10.1016/j.yjpso.2024.100121","DOIUrl":null,"url":null,"abstract":"<div><p>Colorectal paediatric surgeons, rare and complex colorectal patients, and data on this patient group are dispersed far and wide in Australia and New Zealand (ANZ). Online databases facilitate sharing and collating of data, and may help to connect physically separated clinicians and researchers. The Australia New Zealand Congenital Colorectal Registry (ANZCCoRe) is an international, multicentre patient registry that aims to improve clinical outcomes, standardise care, and enhance collaborations between centres with expertise in paediatric colorectal conditions across ANZ.</p><p>The ANZCCoRe will collect retrospective and prospective clinical data of patients with anorectal malformations (ARM) and/or Hirschsprung disease (HD) through an electronic data capturing platform. Collected data will include demographic characteristics, diagnostics, care pathways, associated anomalies, surgical details and complications, and functional outcomes. The datapoints will be categorised into required core data elements and requested additional data elements. Data will be deidentified and stored on secured servers, meeting ethical and legal requirements. Data quality procedures will exist and feasible application of the findability, accessibility, interoperability, and reusability (FAIR) principles will promote data sharing and reuse with other registries.</p><p>Besides gaining a better understanding of the patient and disease characteristics, monitoring care, and evaluating health-related outcomes, the ANZCCoRe provides a source for potential research participants. Lastly, the ANZCCoRe enhances advocacy for patients and families affected by colorectal conditions.</p><p>The ANZCCoRe is the first multicentre congenital colorectal patient registry in this geographical region. Its strengths lie in facilitating research, standardisation of care, patient advocacy, and collaboration with paediatric surgical centres across ANZ and beyond.</p><p>Level of Evidence: IV</p></div>","PeriodicalId":100821,"journal":{"name":"Journal of Pediatric Surgery Open","volume":"6 ","pages":"Article 100121"},"PeriodicalIF":0.0000,"publicationDate":"2024-01-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949711624000066/pdfft?md5=7bfcec84092151a05ea13d3be8240e29&pid=1-s2.0-S2949711624000066-main.pdf","citationCount":"0","resultStr":"{\"title\":\"The Australia New Zealand Congenital Colorectal Registry (ANZCCoRe): Driving innovation through collaboration\",\"authors\":\"Isabel C. Hageman , Misel Trajanovska , Iris A.L.M. van Rooij , Ivo de Blaauw , Sebastian K. King\",\"doi\":\"10.1016/j.yjpso.2024.100121\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div><p>Colorectal paediatric surgeons, rare and complex colorectal patients, and data on this patient group are dispersed far and wide in Australia and New Zealand (ANZ). Online databases facilitate sharing and collating of data, and may help to connect physically separated clinicians and researchers. The Australia New Zealand Congenital Colorectal Registry (ANZCCoRe) is an international, multicentre patient registry that aims to improve clinical outcomes, standardise care, and enhance collaborations between centres with expertise in paediatric colorectal conditions across ANZ.</p><p>The ANZCCoRe will collect retrospective and prospective clinical data of patients with anorectal malformations (ARM) and/or Hirschsprung disease (HD) through an electronic data capturing platform. Collected data will include demographic characteristics, diagnostics, care pathways, associated anomalies, surgical details and complications, and functional outcomes. The datapoints will be categorised into required core data elements and requested additional data elements. Data will be deidentified and stored on secured servers, meeting ethical and legal requirements. Data quality procedures will exist and feasible application of the findability, accessibility, interoperability, and reusability (FAIR) principles will promote data sharing and reuse with other registries.</p><p>Besides gaining a better understanding of the patient and disease characteristics, monitoring care, and evaluating health-related outcomes, the ANZCCoRe provides a source for potential research participants. Lastly, the ANZCCoRe enhances advocacy for patients and families affected by colorectal conditions.</p><p>The ANZCCoRe is the first multicentre congenital colorectal patient registry in this geographical region. 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The Australia New Zealand Congenital Colorectal Registry (ANZCCoRe): Driving innovation through collaboration
Colorectal paediatric surgeons, rare and complex colorectal patients, and data on this patient group are dispersed far and wide in Australia and New Zealand (ANZ). Online databases facilitate sharing and collating of data, and may help to connect physically separated clinicians and researchers. The Australia New Zealand Congenital Colorectal Registry (ANZCCoRe) is an international, multicentre patient registry that aims to improve clinical outcomes, standardise care, and enhance collaborations between centres with expertise in paediatric colorectal conditions across ANZ.
The ANZCCoRe will collect retrospective and prospective clinical data of patients with anorectal malformations (ARM) and/or Hirschsprung disease (HD) through an electronic data capturing platform. Collected data will include demographic characteristics, diagnostics, care pathways, associated anomalies, surgical details and complications, and functional outcomes. The datapoints will be categorised into required core data elements and requested additional data elements. Data will be deidentified and stored on secured servers, meeting ethical and legal requirements. Data quality procedures will exist and feasible application of the findability, accessibility, interoperability, and reusability (FAIR) principles will promote data sharing and reuse with other registries.
Besides gaining a better understanding of the patient and disease characteristics, monitoring care, and evaluating health-related outcomes, the ANZCCoRe provides a source for potential research participants. Lastly, the ANZCCoRe enhances advocacy for patients and families affected by colorectal conditions.
The ANZCCoRe is the first multicentre congenital colorectal patient registry in this geographical region. Its strengths lie in facilitating research, standardisation of care, patient advocacy, and collaboration with paediatric surgical centres across ANZ and beyond.
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