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A Quality Assessmen...
A Quality Assessment of the ARM-Net Registry Design and Data Collection
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- Hageman, Isabel C. (author)
- Radboud University Medical Center,Murdoch Children's Research Institute
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- van der Steeg, Hendrik J.J. (author)
- Radboud University Medical Center
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- Jenetzky, Ekkehart (author)
- Universitätsmedizin Mainz,Witten/Herdecke University
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- Trajanovska, Misel (author)
- Murdoch Children's Research Institute,University of Melbourne
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- King, Sebastian K. (author)
- Royal Children's Hospital, Melbourne,University of Melbourne,Murdoch Children's Research Institute
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- de Blaauw, Ivo (author)
- Radboud University Medical Center
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- van Rooij, Iris A.L.M. (author)
- Radboud University Medical Center
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- Aminoff, Dalia (creator_code:cre_t)
- Italian Association for Anorectal Malformations
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- Amerstorfer, Eva (creator_code:cre_t)
- Medical University of Graz
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- Till, Holger (creator_code:cre_t)
- Medical University of Graz
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- Bagolan, Piero (creator_code:cre_t)
- Bambino Gesù Children’s Hospital
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- Iacobelli, Barbara (creator_code:cre_t)
- Bambino Gesù Children’s Hospital
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- Çavuşoğlu, Hakan (creator_code:cre_t)
- Gazi University
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- Ozen, Onur (creator_code:cre_t)
- Gazi University
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- Deluggi, Stefan (creator_code:cre_t)
- Kepler University Hospital Linz
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- Ludwiczek, Johanna (creator_code:cre_t)
- Kepler University Hospital Linz
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- Divarci, Emre (creator_code:cre_t)
- Ege University Medical School
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- Fanjul, María (creator_code:cre_t)
- Hospital Gregorio Maranon
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- Fascetti-Leon, Francesco (creator_code:cre_t)
- University of Padova
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- Vázquez, Araceli García (creator_code:cre_t)
- 12 de Octubre University Hospital
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- Giné, Carlos (creator_code:cre_t)
- Vall d'Hebron University Hospital
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- Gorter, Ramon (creator_code:cre_t)
- Academic Medical Center of University of Amsterdam (AMC)
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- de Jong, Justin (creator_code:cre_t)
- Academic Medical Center of University of Amsterdam (AMC)
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- Goseman, Jan (creator_code:cre_t)
- University Hospital Leipzig
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- Lacher, Martin (creator_code:cre_t)
- University Hospital Leipzig
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- Grano, Caterina (creator_code:cre_t)
- Sapienza University of Rome
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- Grasshoff-Derr, Sabine (creator_code:cre_t)
- Bürgerhospital and Clementine Childrens Hospital
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- Haanen, Michel (creator_code:cre_t)
- VA-Dutch Patient Organization for Anorectal Malformations
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- Leva, Ernesto (creator_code:cre_t)
- Maggiore Hospital Policlinico
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- Morandi, Anna (creator_code:cre_t)
- Maggiore Hospital Policlinico
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- Lisi, Gabriele (creator_code:cre_t)
- Santo Spirito Civil Hospital
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- Makedonsky, Igor (creator_code:cre_t)
- Children's Hospital Dnepropetrovsk
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- Marcelis, Carlo (creator_code:cre_t)
- Radboud University Medical Center
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- Midrio, Paola (creator_code:cre_t)
- Treviso Hospital
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- Miserez, Marc (creator_code:cre_t)
- University Hospitals Leuven
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- Mohideen, Mazeena (creator_code:cre_t)
- Patient organization
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- PiniPrato, Alessio (creator_code:cre_t)
- Azienda Ospedaliera Nazionale SS A. e B. e Cesare Arrigo
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- Reck-Burneo, Carlos (creator_code:cre_t)
- Medical University of Vienna
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- Reutter, Heiko (creator_code:cre_t)
- University of Bonn
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- Rohleder, Stephan (creator_code:cre_t)
- Universitätsmedizin Mainz
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- Samuk, Inbal (creator_code:cre_t)
- Schneider Children's Medical Center of Israel
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- Schmiedeke, Eberhard (creator_code:cre_t)
- Klinikum Bremen-Mitte
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- Schwarzer, Nicole (creator_code:cre_t)
- German Self-help Organization for Anorectal Malformations SoMA e.V.
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- Sloots, Pim (creator_code:cre_t)
- Sophia Children's Hospital
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- Stenström, Pernilla (creator_code:cre_t)
- Lund University,Lunds universitet,Barnkirurgi,Forskargrupper vid Lunds universitet,LU profilområde: Ljus och material,Lunds universitets profilområden,Pediatric surgery,Lund University Research Groups,LU Profile Area: Light and Materials,Lund University Profile areas
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- Verhaak, Chris (creator_code:cre_t)
- Radboud University Medical Center
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- Vilanova-Sánchez, Alejandra (creator_code:cre_t)
- University Hospital La Paz
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- Volk, Patrick (creator_code:cre_t)
- University Hospital Heidelberg
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- Witvliet, Marieke (creator_code:cre_t)
- Wilhelmina Children’s Hospital
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(creator_code:org_t)
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- Elsevier BV, 2023
- 2023
- English.
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In: Journal of Pediatric Surgery. - : Elsevier BV. - 0022-3468. ; 58:10, s. 1921-1928
- Related links:
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http://dx.doi.org/10... (free)
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https://lup.lub.lu.s...
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https://doi.org/10.1...
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Abstract
Subject headings
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- Background: Registries are important in rare disease research. The Anorectal Malformation Network (ARM-Net) registry is a well-established European patient registry collecting demographic, clinical, and functional outcome data. We assessed the quality of this registry through review of the structure, data elements, collected data, and user experience. Material and methods: Design and data elements were assessed for completeness, consistency, usefulness, accuracy, validity, and comparability. An intra- and inter-user variability study was conducted through monitoring and re-registration of patients. User experience was assessed via a questionnaire on registration, design of registry, and satisfaction. Results: We evaluated 119 data elements, of which 107 were utilized and comprised 42 string and 65 numeric elements. A minority (37.0%) of the 2278 included records had complete data, though this improved to 83.5% when follow-up elements were excluded. Intra-observer variability demonstrated 11.7% incongruence, while inter-observer variability was 14.7%. Users were predominantly pediatric surgeons and typically registered patients within 11–30 min. Users did not experience any significant difficulties with data entry and were generally satisfied with the registry, but preferred more longitudinal data and patient-reported outcomes. Conclusions: The ARM-Net registry presents one of the largest ARM cohorts. Although its collected data are valuable, they are susceptible to error and user variability. Continuous evaluations are required to maintain relevant and high-quality data and to achieve long-term sustainability. With the recommendations resulting from this study, we call for rare disease patient registries to take example and aim to continuously improve their data quality to enhance the small, but impactful, field of rare disease research. Level of Evidence: V.
Subject headings
- MEDICIN OCH HÄLSOVETENSKAP -- Klinisk medicin -- Kirurgi (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Clinical Medicine -- Surgery (hsv//eng)
Keyword
- Anorectal malformations
- Patient registry
- Quality
- Rare diseases
Publication and Content Type
- art (subject category)
- ref (subject category)
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- By the author/editor
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Hageman, Isabel ...
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van der Steeg, H ...
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Jenetzky, Ekkeha ...
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Trajanovska, Mis ...
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King, Sebastian ...
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de Blaauw, Ivo
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show more...
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van Rooij, Iris ...
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Aminoff, Dalia
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Amerstorfer, Eva
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Till, Holger
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Bagolan, Piero
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Iacobelli, Barba ...
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Çavuşoğlu, Hakan
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Ozen, Onur
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Deluggi, Stefan
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Ludwiczek, Johan ...
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Divarci, Emre
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Fanjul, María
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Fascetti-Leon, F ...
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Vázquez, Araceli ...
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Giné, Carlos
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Gorter, Ramon
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de Jong, Justin
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Goseman, Jan
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Lacher, Martin
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Grano, Caterina
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Grasshoff-Derr, ...
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Haanen, Michel
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Leva, Ernesto
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Morandi, Anna
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Lisi, Gabriele
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Makedonsky, Igor
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Marcelis, Carlo
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Midrio, Paola
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Miserez, Marc
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Mohideen, Mazeen ...
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PiniPrato, Aless ...
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Reck-Burneo, Car ...
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Reutter, Heiko
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Rohleder, Stepha ...
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Samuk, Inbal
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Schmiedeke, Eber ...
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Schwarzer, Nicol ...
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Sloots, Pim
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Stenström, Perni ...
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Verhaak, Chris
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Vilanova-Sánchez ...
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Volk, Patrick
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Witvliet, Mariek ...
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- About the subject
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- MEDICAL AND HEALTH SCIENCES
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MEDICAL AND HEAL ...
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and Clinical Medicin ...
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and Surgery
- Articles in the publication
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Journal of Pedia ...
- By the university
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Lund University