SwePub
Sök i LIBRIS databas

  Utökad sökning

WFRF:(Samuk Inbal)
 

Sökning: WFRF:(Samuk Inbal) > (2023) > A Quality Assessmen...

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

Hageman, Isabel C. (författare)
Radboud University Medical Center,Murdoch Children's Research Institute
van der Steeg, Hendrik J.J. (författare)
Radboud University Medical Center
Jenetzky, Ekkehart (författare)
Universitätsmedizin Mainz,Witten/Herdecke University
visa fler...
Trajanovska, Misel (författare)
University of Melbourne,Murdoch Children's Research Institute
King, Sebastian K. (författare)
Murdoch Children's Research Institute,Royal Children's Hospital, Melbourne,University of Melbourne
de Blaauw, Ivo (författare)
Radboud University Medical Center
van Rooij, Iris A.L.M. (författare)
Radboud University Medical Center
Aminoff, Dalia (creator_code:cre_t)
Italian Association for Anorectal Malformations
Amerstorfer, Eva (creator_code:cre_t)
Medical University of Graz
Till, Holger (creator_code:cre_t)
Medical University of Graz
Bagolan, Piero (creator_code:cre_t)
Bambino Gesù Children’s Hospital
Iacobelli, Barbara (creator_code:cre_t)
Bambino Gesù Children’s Hospital
Çavuşoğlu, Hakan (creator_code:cre_t)
Gazi University
Ozen, Onur (creator_code:cre_t)
Gazi University
Deluggi, Stefan (creator_code:cre_t)
Kepler University Hospital Linz
Ludwiczek, Johanna (creator_code:cre_t)
Kepler University Hospital Linz
Divarci, Emre (creator_code:cre_t)
Ege University Medical School
Fanjul, María (creator_code:cre_t)
Hospital Gregorio Maranon
Fascetti-Leon, Francesco (creator_code:cre_t)
University of Padova
Vázquez, Araceli García (creator_code:cre_t)
12 de Octubre University Hospital
Giné, Carlos (creator_code:cre_t)
Vall d'Hebron University Hospital
Gorter, Ramon (creator_code:cre_t)
Academic Medical Center of University of Amsterdam (AMC)
de Jong, Justin (creator_code:cre_t)
Academic Medical Center of University of Amsterdam (AMC)
Goseman, Jan (creator_code:cre_t)
University Hospital Leipzig
Lacher, Martin (creator_code:cre_t)
University Hospital Leipzig
Grano, Caterina (creator_code:cre_t)
Sapienza University of Rome
Grasshoff-Derr, Sabine (creator_code:cre_t)
Bürgerhospital and Clementine Childrens Hospital
Haanen, Michel (creator_code:cre_t)
VA-Dutch Patient Organization for Anorectal Malformations
Leva, Ernesto (creator_code:cre_t)
Maggiore Hospital Policlinico
Morandi, Anna (creator_code:cre_t)
Maggiore Hospital Policlinico
Lisi, Gabriele (creator_code:cre_t)
Santo Spirito Civil Hospital
Makedonsky, Igor (creator_code:cre_t)
Children's Hospital Dnepropetrovsk
Marcelis, Carlo (creator_code:cre_t)
Radboud University Medical Center
Midrio, Paola (creator_code:cre_t)
Treviso Hospital
Miserez, Marc (creator_code:cre_t)
University Hospitals Leuven
Mohideen, Mazeena (creator_code:cre_t)
Patient organization
PiniPrato, Alessio (creator_code:cre_t)
Azienda Ospedaliera Nazionale SS A. e B. e Cesare Arrigo
Reck-Burneo, Carlos (creator_code:cre_t)
Medical University of Vienna
Reutter, Heiko (creator_code:cre_t)
University of Bonn
Rohleder, Stephan (creator_code:cre_t)
Universitätsmedizin Mainz
Samuk, Inbal (creator_code:cre_t)
Schneider Children's Medical Center of Israel
Schmiedeke, Eberhard (creator_code:cre_t)
Klinikum Bremen-Mitte
Schwarzer, Nicole (creator_code:cre_t)
German Self-help Organization for Anorectal Malformations SoMA e.V.
Sloots, Pim (creator_code:cre_t)
Sophia Children's Hospital
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
Verhaak, Chris (creator_code:cre_t)
Radboud University Medical Center
Vilanova-Sánchez, Alejandra (creator_code:cre_t)
University Hospital La Paz
Volk, Patrick (creator_code:cre_t)
University Hospital Heidelberg
Witvliet, Marieke (creator_code:cre_t)
Wilhelmina Children’s Hospital
visa färre...
 (creator_code:org_t)
 
Elsevier BV, 2023
2023
Engelska.
Ingår i: Journal of Pediatric Surgery. - : Elsevier BV. - 0022-3468. ; 58:10, s. 1921-1928
Relaterad länk:
http://dx.doi.org/10... (free)
visa fler...
https://lup.lub.lu.s...
https://doi.org/10.1...
visa färre...
  • Tidskriftsartikel (refereegranskat)
Abstract Ämnesord
Stäng  
  • 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.

Ämnesord

MEDICIN OCH HÄLSOVETENSKAP  -- Klinisk medicin -- Kirurgi (hsv//swe)
MEDICAL AND HEALTH SCIENCES  -- Clinical Medicine -- Surgery (hsv//eng)

Nyckelord

Anorectal malformations
Patient registry
Quality
Rare diseases

Publikations- och innehållstyp

art (ämneskategori)
ref (ämneskategori)

Hitta via bibliotek

Till lärosätets databas

Kungliga biblioteket hanterar dina personuppgifter i enlighet med EU:s dataskyddsförordning (2018), GDPR. Läs mer om hur det funkar här.
Så här hanterar KB dina uppgifter vid användning av denna tjänst.

 
pil uppåt Stäng

Kopiera och spara länken för att återkomma till aktuell vy