The strengths and complexities of European registries concerning paediatric kidney transplantation health care
IntroductionPatient data are increasingly available in (multi)national registries, especially for rare diseases. This study aims to provide an overview of current European registries of paediatric kidney transplantation (PKT) care, their coverage, and their focus. Based on these data, we assess whet...
| Main Authors: | , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2023-03-01
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| Series: | Frontiers in Pediatrics |
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| Online Access: | https://www.frontiersin.org/articles/10.3389/fped.2023.1121282/full |
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| author | Loes Oomen Liesbeth L. De Wall Kai Krupka Burkhard Tönshoff Tanja Wlodkowski Loes FM Van Der Zanden Marjolein Bonthuis Marjolein Bonthuis Ilse D. Duus Weinreich Linda Koster-Kamphuis Wout FJ Feitz Charlotte MHHT Bootsma-Robroeks Charlotte MHHT Bootsma-Robroeks |
| author_facet | Loes Oomen Liesbeth L. De Wall Kai Krupka Burkhard Tönshoff Tanja Wlodkowski Loes FM Van Der Zanden Marjolein Bonthuis Marjolein Bonthuis Ilse D. Duus Weinreich Linda Koster-Kamphuis Wout FJ Feitz Charlotte MHHT Bootsma-Robroeks Charlotte MHHT Bootsma-Robroeks |
| author_sort | Loes Oomen |
| collection | DOAJ |
| description | IntroductionPatient data are increasingly available in (multi)national registries, especially for rare diseases. This study aims to provide an overview of current European registries of paediatric kidney transplantation (PKT) care, their coverage, and their focus. Based on these data, we assess whether the current status is optimal for achieving our common goal: the optimalisation of health care.MethodsA list of all PKT centres within the European Union (EU) as well as active PKT registries was compiled using existing literature and the European Platform on Rare Disease Registration. Registry staff members were contacted to obtain information about the parameters collected and the registry design. These data were compared between registries.ResultsIn total, 109 PKT centres performing PKT surgery were identified in the 27 EU Member States. Currently, five European PKT registries are actively collecting data. In 39% of these centres, no data were registered within any of these five existing international registries. A large variety was observed in the number of patients, centres, and countries involved in the registries. Furthermore, variability existed regarding the inclusion criteria, definitions used, and parameters collected. Collection of perioperative urologic data are currently underrepresented in the registries.DiscussionCurrently, multiple registries are collecting valuable information in the field of PKT, covering the majority of PKT centres in Europe. Due to a large variety in the parameters collected as well as different focuses, data collection is currently fragmented and suboptimal; therefore, the current existing data are incomplete. In addition, a considerable proportion of the transplantation centres do not enter data in any international registry. Combining available information and harmonising future data collection could empower the aim of these registries—namely increasing insights into the strengths and potential of current care and therefore improve healthcare |
| first_indexed | 2024-04-09T23:16:12Z |
| format | Article |
| id | doaj.art-40542666d08946e48d2b42b290d86881 |
| institution | Directory Open Access Journal |
| issn | 2296-2360 |
| language | English |
| last_indexed | 2024-04-09T23:16:12Z |
| publishDate | 2023-03-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Pediatrics |
| spelling | doaj.art-40542666d08946e48d2b42b290d868812023-03-22T06:14:28ZengFrontiers Media S.A.Frontiers in Pediatrics2296-23602023-03-011110.3389/fped.2023.11212821121282The strengths and complexities of European registries concerning paediatric kidney transplantation health careLoes Oomen0Liesbeth L. De Wall1Kai Krupka2Burkhard Tönshoff3Tanja Wlodkowski4Loes FM Van Der Zanden5Marjolein Bonthuis6Marjolein Bonthuis7Ilse D. Duus Weinreich8Linda Koster-Kamphuis9Wout FJ Feitz10Charlotte MHHT Bootsma-Robroeks11Charlotte MHHT Bootsma-Robroeks12Division of Paediatric Urology, Department of Urology, Radboudumc Amalia Children’s Hospital, Nijmegen, NetherlandsDivision of Paediatric Urology, Department of Urology, Radboudumc Amalia Children’s Hospital, Nijmegen, NetherlandsCERTAIN Registry, Department of Paediatrics I, University Children's Hospital Heidelberg, Heidelberg, GermanyCERTAIN Registry, Department of Paediatrics I, University Children's Hospital Heidelberg, Heidelberg, GermanyERKReg, Division of Paediatric Nephrology, Centre for Pediatrics and Adolescent Medicine, University of Heidelberg, Heidelberg, GermanyDepartment for Health Evidence, Radboudumc, Nijmegen, NetherlandsESPN/ERA Registry, Department of Medical Informatics, Amsterdam UMC Location University of Amsterdam, Amsterdam, NetherlandsDepartment Quality of Care, Amsterdam Public Health, Quality of Care, Amsterdam, NetherlandsDepartment of Clinical Medicine, Scandiatransplant, Aarhus University Hospital, Aarhus, DenmarkDepartment of Paediatric Nephrology, Radboudumc Amalia Children’s Hospital, Nijmegen, NetherlandsDivision of Paediatric Urology, Department of Urology, Radboudumc Amalia Children’s Hospital, Nijmegen, NetherlandsDepartment of Paediatric Nephrology, Radboudumc Amalia Children’s Hospital, Nijmegen, NetherlandsDepartment of Paediatrics, Paediatric Nephrology, University of Groningen, University Medical Centre Groningen, Beatrix Children’s Hospital, Groningen, NetherlandsIntroductionPatient data are increasingly available in (multi)national registries, especially for rare diseases. This study aims to provide an overview of current European registries of paediatric kidney transplantation (PKT) care, their coverage, and their focus. Based on these data, we assess whether the current status is optimal for achieving our common goal: the optimalisation of health care.MethodsA list of all PKT centres within the European Union (EU) as well as active PKT registries was compiled using existing literature and the European Platform on Rare Disease Registration. Registry staff members were contacted to obtain information about the parameters collected and the registry design. These data were compared between registries.ResultsIn total, 109 PKT centres performing PKT surgery were identified in the 27 EU Member States. Currently, five European PKT registries are actively collecting data. In 39% of these centres, no data were registered within any of these five existing international registries. A large variety was observed in the number of patients, centres, and countries involved in the registries. Furthermore, variability existed regarding the inclusion criteria, definitions used, and parameters collected. Collection of perioperative urologic data are currently underrepresented in the registries.DiscussionCurrently, multiple registries are collecting valuable information in the field of PKT, covering the majority of PKT centres in Europe. Due to a large variety in the parameters collected as well as different focuses, data collection is currently fragmented and suboptimal; therefore, the current existing data are incomplete. In addition, a considerable proportion of the transplantation centres do not enter data in any international registry. Combining available information and harmonising future data collection could empower the aim of these registries—namely increasing insights into the strengths and potential of current care and therefore improve healthcarehttps://www.frontiersin.org/articles/10.3389/fped.2023.1121282/fullkidney transplantationchildrenregistriesEuropean uniondata collection |
| spellingShingle | Loes Oomen Liesbeth L. De Wall Kai Krupka Burkhard Tönshoff Tanja Wlodkowski Loes FM Van Der Zanden Marjolein Bonthuis Marjolein Bonthuis Ilse D. Duus Weinreich Linda Koster-Kamphuis Wout FJ Feitz Charlotte MHHT Bootsma-Robroeks Charlotte MHHT Bootsma-Robroeks The strengths and complexities of European registries concerning paediatric kidney transplantation health care Frontiers in Pediatrics kidney transplantation children registries European union data collection |
| title | The strengths and complexities of European registries concerning paediatric kidney transplantation health care |
| title_full | The strengths and complexities of European registries concerning paediatric kidney transplantation health care |
| title_fullStr | The strengths and complexities of European registries concerning paediatric kidney transplantation health care |
| title_full_unstemmed | The strengths and complexities of European registries concerning paediatric kidney transplantation health care |
| title_short | The strengths and complexities of European registries concerning paediatric kidney transplantation health care |
| title_sort | strengths and complexities of european registries concerning paediatric kidney transplantation health care |
| topic | kidney transplantation children registries European union data collection |
| url | https://www.frontiersin.org/articles/10.3389/fped.2023.1121282/full |
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