Evidence map›Paper›PMID 34449798›Full record

ArticlePloS one2021

Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records: A EUROlinkCAT study.

M Loane, J E Given, J Tan, A Reid, D Akhmedzhanova, G Astolfi, I Barišić, N Bertille, L B Bonet, C C Carbonell and 28 more

Open access · goldAbstract read
In one paragraph

Article in PloS one, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers, 4 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
20citing papers in PubMed, 4 pooled it
4.3field-weighted citation impact, top 5% 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

20 citing papers in PubMed, 4 syntheses or guidelines pooled it, 30 citations in OpenAlex.

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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

38 authors at 20 institutions in 13 countries.

M LoaneFaculty of Life and Health Sciences, Ulster University, Northern Ireland, United Kingdom.ORCID 0000-0002-1206-3637
J E GivenFaculty of Life and Health Sciences, Ulster University, Northern Ireland, United Kingdom.ORCID 0000-0003-4921-1944
J TanPopulation Health Research Institute, St George's, University of London, London, United Kingdom.ORCID 0000-0003-0462-4761
A ReidPopulation Health Research Institute, St George's, University of London, London, United Kingdom.
D AkhmedzhanovaOMNI-Net for Children International Charitable Fund, Rivne Regional Medical Diagnostic Center, Rivne, Ukraine.ORCID 0000-0001-5845-2956
G AstolfiEmilia Romagna Registry of Birth Defects, University Hospital of Ferrara, Ferrara, Italy.
I BarišićKlinika za dječje bolesti, Zagreb, Croatia.
N BertilleInstitut National de la Santé et de la Recherche Médicale, Paris, France.
L B BonetRare Diseases Research Unit, Foundation for the Promotion of Health and Biomedical Research in the Valencian Region, Valencia, Spain.
C C CarbonellRare Diseases Research Unit, Foundation for the Promotion of Health and Biomedical Research in the Valencian Region, Valencia, Spain.ORCID 0000-0002-4858-6456
O Mokoroa CarolloDepartamento de Salud Gobierno Vasco, Basque Country, Spain.ORCID 0000-0003-3831-6089
A CoiUnit of Epidemiology of Rare Diseases and Congenital Anomalies, Institute of Clinical Physiology, National Research Council, Pisa, Italy.ORCID 0000-0002-9816-3144
J DensemBiomedical Computing Limited, Battle, United Kingdom.
E DraperEast Midlands & South Yorkshire Congenital Anomaly Registry, University of Leicester, Leicester, United Kingdom.
E GarneHospital Lillebaelt, Region Syddanmark, Denmark.ORCID 0000-0003-0430-2594
M GattDirectorate for Health Information and Research, G'Mangia, Malta.
S V GlinianaiaFaculty of Medical Sciences, Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, United Kingdom.ORCID 0000-0001-6690-4975
A HeinoFinnish Institute for Health and Welfare, Helsinki, Finland.
E Den HondProvinciaal Instituut voor Hygiëne (PIH), Antwerpen, Belgium.
S JordanSwansea University, Wales, United Kingdom.ORCID 0000-0002-5691-2987
B KhoshnoodInstitut National de la Santé et de la Recherche Médicale, Paris, France.
S Kiuru-KuhlefeltFinnish Institute for Health and Welfare, Helsinki, Finland.
K KlungsøyrDivision of Mental and Physical Health, Department of Global Public Health and Primary Care, Norwegian Institute of Public Health, University of Bergen, Bergen, Norway.
N LelongInstitut National de la Santé et de la Recherche Médicale, Paris, France.
L R LutkeDepartment of Genetics, University Medical Center, University of Groningen, Groningen, The Netherlands.
A J NevilleEmilia Romagna Registry of Birth Defects, University Hospital of Ferrara, Ferrara, Italy.
L OstapchukOMNI-Net for Children International Charitable Fund, Rivne Regional Medical Diagnostic Center, Rivne, Ukraine.
A PucciniTerritorial Care Service, Emilia Romagna Health Authority, Bologna, Italy.
A RissmannMedical Faculty Otto-von-Guericke, Malformation Monitoring Centre Saxony-Anhalt, University Magdeburg, Magdeburg, Germany.ORCID 0000-0002-9437-2790
M SantoroUnit of Epidemiology of Rare Diseases and Congenital Anomalies, Institute of Clinical Physiology, National Research Council, Pisa, Italy.
I ScanlonSwansea University, Wales, United Kingdom.
G ThysProvinciaal Instituut voor Hygiëne (PIH), Antwerpen, Belgium.
D TuckerPublic Health Wales, Wales, United Kingdom.
S K UrhojSection of Epidemiology, University of Copenhagen, Copenhagen, Denmark.ORCID 0000-0002-2069-9723
H E K de WalleDepartment of Genetics, University Medical Center, University of Groningen, Groningen, The Netherlands.
D WellesleyWessex Clinical Genetics Service, Princess Anne Hospital, Southampton, United Kingdom.
O ZurriagaRare Diseases Research Unit, Foundation for the Promotion of Health and Biomedical Research in the Valencian Region, Valencia, Spain.
J K MorrisPopulation Health Research Institute, St George's, University of London, London, United Kingdom.ORCID 0000-0002-7164-612X
Fundación para el Fomento de la Investigación Sanitaria y Biomédica de la Comunitat Valenciana · ESInserm · FRSt George's, University of London · GBFinnish Institute for Health and Welfare · FIIstituto di Fisiologia Clinica · ITProvincial Institute for Hygiene · BERivne State University of Humanities · UASwansea University · GBUniversity Medical Center Groningen · NLUniversity of Ferrara · ITUniversity of Ulster · GBAzienda Unità Sanitaria Locale Della Romagna · ITBasque Government · ESChildren's Hospital Zagreb · HRMinistry for Health · MTNewcastle University · GBNorwegian Institute of Public Health · NOOtto-von-Guericke-Universität Magdeburg · DEPrincess Anne Hospital · GBPublic Health Wales · GB

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

EUROCAT is a European network of population-based congenital anomaly (CA) registries. Twenty-one registries agreed to participate in the EUROlinkCAT study to determine if reliable information on the survival of children born with a major CA between 1995 and 2014 can be obtained through linkage to national vital statistics or mortality records. Live birth children with a CA could be linked using personal identifiers to either their national vital statistics (including birth records, death records, hospital records) or to mortality records only, depending on the data available within each region. In total, 18 of 21 registries with data on 192,862 children born with congenital anomalies participated in the study. One registry was unable to get ethical approval to participate and linkage was not possible for two registries due to local reasons. Eleven registries linked to vital statistics and seven registries linked to mortality records only; one of the latter only had identification numbers for 78% of cases, hence it was excluded from further analysis. For registries linking to vital statistics: six linked over 95% of their cases for all years and five were unable to link at least 85% of all live born CA children in the earlier years of the study. No estimate of linkage success could be calculated for registries linking to mortality records. Irrespective of linkage method, deaths that occurred during the first week of life were over three times less likely to be linked compared to deaths occurring after the first week of life. Linkage to vital statistics can provide accurate estimates of survival of children with CAs in some European countries. Bias arises when linkage is not successful, as early neonatal deaths were less likely to be linked. Linkage to mortality records only cannot be recommended, as linkage quality, and hence bias, cannot be assessed.

Indexed as

Birth CertificatesVital StatisticsCongenital AbnormalitiesEuropeFemaleHumansInfant, NewbornMalePregnancyRegistries

Identifiers

PMID34449798
PMCPMC8396745
OpenAlexW3194337530

What OpenQuestion holds

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LicenceCC BY
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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.