Evidence map›Paper›PMID 37033192›Full record

ArticleFrontiers in pediatrics2023

The strengths and complexities of European registries concerning paediatric kidney transplantation health care.

Loes Oomen, Liesbeth L De Wall, Kai Krupka, Burkhard Tönshoff, Tanja Wlodkowski, Loes Fm Van Der Zanden, Marjolein Bonthuis, Ilse D Duus Weinreich, Linda Koster-Kamphuis, Wout Fj Feitz and 1 more

Open access · goldAbstract read
In one paragraph

Article in Frontiers in pediatrics, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed, 1 pooled it
1.5field-weighted citation impact, top 19% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

4 citing papers in PubMed, 1 synthesis or guideline pooled it, 6 citations in OpenAlex.

  1. Pseudonymization tools for medical research: a systematic review.BMC medical informatics and decision making · 2025
    Pooled it
  2. Article
  3. Article
  4. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors at 7 institutions in 3 countries.

Loes OomenDivision of Paediatric Urology, Department of Urology, Radboudumc Amalia Children's Hospital, Nijmegen, Netherlands.
Liesbeth L De WallDivision of Paediatric Urology, Department of Urology, Radboudumc Amalia Children's Hospital, Nijmegen, Netherlands.
Kai KrupkaCERTAIN Registry, Department of Paediatrics I, University Children's Hospital Heidelberg, Heidelberg, Germany.
Burkhard TönshoffCERTAIN Registry, Department of Paediatrics I, University Children's Hospital Heidelberg, Heidelberg, Germany.
Tanja WlodkowskiERKReg, Division of Paediatric Nephrology, Centre for Pediatrics and Adolescent Medicine, University of Heidelberg, Heidelberg, Germany.
Loes Fm Van Der ZandenDepartment for Health Evidence, Radboudumc, Nijmegen, Netherlands.
Marjolein BonthuisESPN/ERA Registry, Department of Medical Informatics, Amsterdam UMC Location University of Amsterdam, Amsterdam, Netherlands.
Ilse D Duus WeinreichDepartment of Clinical Medicine, Scandiatransplant, Aarhus University Hospital, Aarhus, Denmark.
Linda Koster-KamphuisDepartment of Paediatric Nephrology, Radboudumc Amalia Children's Hospital, Nijmegen, Netherlands.
Wout Fj FeitzDivision of Paediatric Urology, Department of Urology, Radboudumc Amalia Children's Hospital, Nijmegen, Netherlands.
Charlotte Mhht Bootsma-RobroeksDepartment of Paediatric Nephrology, Radboudumc Amalia Children's Hospital, Nijmegen, Netherlands.
Amalia Kinderziekenhuis · NLHeidelberg University · DEAarhus University Hospital · DKRadboud University Medical Center · NLUniversity Hospital Heidelberg · DEUniversity Medical Center Groningen · NLUniversity of Amsterdam · NL

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Introduction: Patient 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. Methods: A 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. Results: In 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. Discussion: Currently, 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.

Indexed as

childrendata collectionEuropean unionkidney transplantationregistries

Identifiers

PMID37033192
PMCPMC10073744
OpenAlexW4353081129

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.