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  • Hageman, Isabel C.Radboud University Medical Center,Murdoch Children's Research Institute (author)

A Quality Assessment of the ARM-Net Registry Design and Data Collection

  • Article/chapterEnglish2023

Publisher, publication year, extent ...

  • Elsevier BV,2023

Numbers

  • LIBRIS-ID:oai:lup.lub.lu.se:8a8214c4-cbaa-4e9c-9a13-6a7ac7e2db83
  • https://lup.lub.lu.se/record/8a8214c4-cbaa-4e9c-9a13-6a7ac7e2db83URI
  • https://doi.org/10.1016/j.jpedsurg.2023.02.049DOI

Supplementary language notes

  • Language:English
  • Summary in:English

Part of subdatabase

Classification

  • Subject category:art swepub-publicationtype
  • Subject category:ref swepub-contenttype

Notes

  • 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 and genre

Added entries (persons, corporate bodies, meetings, titles ...)

  • van der Steeg, Hendrik J.J.Radboud University Medical Center (author)
  • Jenetzky, EkkehartUniversitätsmedizin Mainz,Witten/Herdecke University (author)
  • Trajanovska, MiselUniversity of Melbourne,Murdoch Children's Research Institute (author)
  • King, Sebastian K.Royal Children's Hospital, Melbourne,University of Melbourne,Murdoch Children's Research Institute (author)
  • de Blaauw, IvoRadboud University Medical Center (author)
  • van Rooij, Iris A.L.M.Radboud University Medical Center (author)
  • Aminoff, DaliaItalian Association for Anorectal Malformations (creator_code:cre_t)
  • Amerstorfer, EvaMedical University of Graz (creator_code:cre_t)
  • Till, HolgerMedical University of Graz (creator_code:cre_t)
  • Bagolan, PieroBambino Gesù Children’s Hospital (creator_code:cre_t)
  • Iacobelli, BarbaraBambino Gesù Children’s Hospital (creator_code:cre_t)
  • Çavuşoğlu, HakanGazi University (creator_code:cre_t)
  • Ozen, OnurGazi University (creator_code:cre_t)
  • Deluggi, StefanKepler University Hospital Linz (creator_code:cre_t)
  • Ludwiczek, JohannaKepler University Hospital Linz (creator_code:cre_t)
  • Divarci, EmreEge University Medical School (creator_code:cre_t)
  • Fanjul, MaríaHospital Gregorio Maranon (creator_code:cre_t)
  • Fascetti-Leon, FrancescoUniversity of Padova (creator_code:cre_t)
  • Vázquez, Araceli García12 de Octubre University Hospital (creator_code:cre_t)
  • Giné, CarlosVall d'Hebron University Hospital (creator_code:cre_t)
  • Gorter, RamonAcademic Medical Center of University of Amsterdam (AMC) (creator_code:cre_t)
  • de Jong, JustinAcademic Medical Center of University of Amsterdam (AMC) (creator_code:cre_t)
  • Goseman, JanUniversity Hospital Leipzig (creator_code:cre_t)
  • Lacher, MartinUniversity Hospital Leipzig (creator_code:cre_t)
  • Grano, CaterinaSapienza University of Rome (creator_code:cre_t)
  • Grasshoff-Derr, SabineBürgerhospital and Clementine Childrens Hospital (creator_code:cre_t)
  • Haanen, MichelVA-Dutch Patient Organization for Anorectal Malformations (creator_code:cre_t)
  • Leva, ErnestoMaggiore Hospital Policlinico (creator_code:cre_t)
  • Morandi, AnnaMaggiore Hospital Policlinico (creator_code:cre_t)
  • Lisi, GabrieleSanto Spirito Civil Hospital (creator_code:cre_t)
  • Makedonsky, IgorChildren's Hospital Dnepropetrovsk (creator_code:cre_t)
  • Marcelis, CarloRadboud University Medical Center (creator_code:cre_t)
  • Midrio, PaolaTreviso Hospital (creator_code:cre_t)
  • Miserez, MarcUniversity Hospitals Leuven (creator_code:cre_t)
  • Mohideen, MazeenaPatient organization (creator_code:cre_t)
  • PiniPrato, AlessioAzienda Ospedaliera Nazionale SS A. e B. e Cesare Arrigo (creator_code:cre_t)
  • Reck-Burneo, CarlosMedical University of Vienna (creator_code:cre_t)
  • Reutter, HeikoUniversity of Bonn (creator_code:cre_t)
  • Rohleder, StephanUniversitätsmedizin Mainz (creator_code:cre_t)
  • Samuk, InbalSchneider Children's Medical Center of Israel (creator_code:cre_t)
  • Schmiedeke, EberhardKlinikum Bremen-Mitte (creator_code:cre_t)
  • Schwarzer, NicoleGerman Self-help Organization for Anorectal Malformations SoMA e.V. (creator_code:cre_t)
  • Sloots, PimSophia Children's Hospital (creator_code:cre_t)
  • Stenström, PernillaLund 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(Swepub:lu)med-pes (creator_code:cre_t)
  • Verhaak, ChrisRadboud University Medical Center (creator_code:cre_t)
  • Vilanova-Sánchez, AlejandraUniversity Hospital La Paz (creator_code:cre_t)
  • Volk, PatrickUniversity Hospital Heidelberg (creator_code:cre_t)
  • Witvliet, MariekeWilhelmina Children’s Hospital (creator_code:cre_t)
  • Radboud University Medical CenterMurdoch Children's Research Institute (creator_code:org_t)
  • ARM-Net consortium

Related titles

  • In:Journal of Pediatric Surgery: Elsevier BV58:10, s. 1921-19280022-3468

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