EUROlinkCAT: Establishing a linked European Cohort of Children with Congenital Anomalies

Deliverables

Interactive website tables
Information Leaflet

Produce initial information leaflet to promote EUROlinkCAT project.

Report on geographical variations in Europe on survival of children born with a congenital anomaly
Manual describing data held in the Central Results Registry
Report on prenatal diagnosis and morbidity
Report on education achievements and needs of children born with a congenital anomaly in selected European countries, with predictions of the number of children with special education needs for the next 5 years

Report on education achievements and needs of children born with a congenital anomaly in selected European countries with predictions of the number of children with special education needs for the next 5 years

Report on survival and risk factors for survival for children born with a congenital anomaly
Report on the evaluation of specific congenital anomaly coding in health care databases including a computer algorithm to improve these codes
Report on Hospitalisations and surgery across Europe for the first 5 years of life
Report on Infections and use of antibiotics during the first 5 years of life
Formation of e stakeholder forum “ConnectEpeople”

Dissemination conference
Initial Website Online

Uploading the content to the website, with the first version ready by month 6

Build Website

Build the website and install a CMS on the website

Report to EU institutions hosting health care databases with guidelines for improving the quality of the congenital anomaly coding

Publications

COVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare services

Author(s): Elena Marcus, Anna Latos-Bieleńska, Anna Jamry-Dziurla, Judith Rankin, Ingeborg Barisic, Clara Cavero- Carbonell, Elly Den Hond, Ester Garne, Lucas Genard, Ana Santos, Renee Lutke, Carlos Dias, Christina Neergaard Pedersen, Amanda Neville, Annika Niemann, Ljubica Odak, Lucía Páramo-Rodríguez, Anna Pierini, Anke Rissmann, Joan Morris
Published in: BMJ Open, 2022, ISSN 2044-6055
Publisher: BMJ Publishing Group
DOI: 10.1136/bmjopen-2022-061428

Academic achievement and needs of school-aged childrenborn with selected congenital anomalies: A systematic review and meta-analysis

Author(s): Svetlana V. Glinianaia, Ashleigh McLean, Malcolm Moffat, Rebekka Shenfine, Annarita Armaroli, Judith Rankin
Published in: Birth Defects Research, Issue 113, 2021, Page(s) 1431-1462, ISSN 2472-1727
Publisher: Wiley
DOI: 10.1002/bdr2.1961

Survival of children with rare structural congenital anomalies: a multi-registry cohort study

Author(s): Coi A, Santoro M, Pierini A, Rankin J, Glinianaia SV, Tan J, Reid AK, Garne E, Loane M, Given J, Ballardini E, Cavero-Carbonell C, de Walle HEK, Gatt M, García-Villodre L, Gissler M, Jordan S, Kiuru-Kuhlefelt S, Kjaer Urhoj S, Klungsøyr K, Lelong N, Lutke LR, Neville AJ, Rahshenas M, Scanlon I, Wellesley D, Morris JK.
Published in: Orphanet J Rare Dis, Issue 17(1), 2022, ISSN 1750-1172
Publisher: BioMed Central
DOI: 10.1186/s13023-022-02292-y

Temporal and geographical variations in survival of children born with congenital anomalies in Europe: A multi-registry cohort study

Author(s): Michele Santoro, Alessio Coi, Anna Pierini, Judith Rankin, Svetlana V. Glinianaia, Joachim Tan, Abigail Reid, Ester Garne, Maria Loane, Joanne Given, Amaia Aizpurua, Gianni Astolfi, Ingeborg Barisic, Clara Cavero-Carbonell, Hermien E. K. de Walle, Elly Den Hond, Laura García-Villodre, Miriam Gatt, Mika Gissler, Sue Jordan, Babak Khoshnood, Sonja Kiuru-Kuhlefelt, Kari Klungsøyr, Nathalie Lelong,
Published in: Paediatric and Perinatal Epidemiology, 2022, ISSN 0269-5022
Publisher: Blackwell Publishing Inc.
DOI: 10.1111/ppe.12884

Preterm birth and prescriptions for cardiovascular, antiseizure, antibiotics and antiasthmatic medication in children up to 10 years of age: a population-based data linkage cohort study across six European regions

Author(s): Mads Damkjaer; Maria Loane; Stine Kjær Urhøj; Elisa Ballardini; Clara Cavero- Carbonell; Alessio Coi; Laura García-Villodre; Joanne Emma Given; Mika Gissler; Anna Heino; Susan Jordan; Amanda Neville; Anna Pierini; Joachim Tan; Ieuan Scanlon; Ester Garne; Joan K Morris
Published in: BMJ Open, Issue 12(10), 2022, ISSN 2044-6055
Publisher: BMJ Publishing Group
DOI: 10.1136/bmjopen-2022-061746

Ten-year survival of children with congenital anomalies: a European cohort study

Author(s): Glinianaia SV, Rankin J, Pierini A, Coi A, Santoro M, Tan J, Reid A, Garne E, Loane M, Given J, Cavero-Carbonell C, de Walle HEK, Gatt M, Gissler M, Heino A, Khoshnood B, Klungsøyr K, Lelong N, Neville AJ, Thayer DS, Tucker D, Urhøj SK, Wellesley D, Zurriaga O, Morris JK.
Published in: Pediatrics, Issue 149(3), 2022, ISSN 0031-4005
Publisher: American Academy of Pediatrics
DOI: 10.1542/peds.2021-053793

Ten-year survival of children with trisomy 13 or trisomy 18: a multi-registryEuropean cohort study

Author(s): Glinianaia SV, Rankin J, Tan J, Loane M, Garne E, Cavero-Carbonell C, de Walle HEK, Gatt M, Gissler M, Klungsøyr K, Lelong N, Neville A, Pierini A, Tucker DF, Urhoj SK, Wellesley DG, Morris JK.
Published in: Arch Dis Child, 2023, ISSN 0003-9888
Publisher: BMJ Publishing Group
DOI: 10.1136/archdischild-2022-325068

Long-term survival of children born with congenital anomalies: A systematic review and meta-analysis of population-based studies.

Author(s): Svetlana V. Glinianaia; Joan K Morris; Kate E. Best; Michele Santoro; Alessio Coi; A. Armaroli; Judith Rankin
Published in: PLOS Medicine, Issue 8, 2020, ISSN 1549-1277
Publisher: Public Library of Science
DOI: 10.1371/journal.pmed.1003356

Prescription of cardiovascular medication in children with congenital heart defects across six European Regions from 2000 to 2014: data from the EUROlinkCAT population-based cohort study

Author(s): Mads Damkjaer, Stine Kjaer Urhoj, Joachim Tan, Gillian Briggs, Maria Loane, Joanne Emma Given, Laia Barrachina-Bonet, Clara Cavero-Carbonell, Alessio Coi, Amanda J Neville, Anna Heino, Sonja Kiuru-Kuhlefelt, Susan Jordan, Ieuan Scanlon, Anna Pierini, Aurora Puccini, Ester Garne, Joan K Morris
Published in: BMJ Open, 2022, ISSN 2044-6055
Publisher: BMJ Publishing Group
DOI: 10.1136/bmjopen-2021-057400

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

Author(s): Maria Loane; Joanne Given; Joachim Tan; A Reid; D Akhmedzhanova; G Astolfi; Ingeborg Barišić; Nathalie Bertille; L B Bonet; C C Carbonell; O Mokoroa Carollo; Alessio Coi; J. W. Densem; Elizabeth S Draper; E Garne; Miriam Gatt; Svetlana V. Glinianaia; A Heino; E Den Hond; Sue Jordan; Babak Khoshnood; Sonja Kiuru-Kuhlefelt; Kari Klungsøyr; Nathalie Lelong; L R Lutke; Amanda J. Neville; L Ostapchu
Published in: PLOS One, Issue 16(8), 2021, Page(s) 1-15, ISSN 1932-6203
Publisher: Public Library of Science
DOI: 10.1371/journal.pone.0256535

Information needs of parents of children with congenital anomalies across Europe: a EUROlinkCAT survey

Author(s): Marcus E, Latos-Bielenska A, Jamry-Dziurla A, Barišić I, Cavero-Carbonell C, Den Hond E, Garne E, Genard L, Santos AJ, Lutke L, Matias Dias C, Neergaard Pedersen C, Neville AJ, Niemann A, Odak L, Pierini A, Rico J, Rissmann A, Rankin J, Morris JK.
Published in: BMC Pediatr, Issue 22(1), 2023, ISSN 1471-2431
Publisher: BioMed Central
DOI: 10.1186/s12887-022-03734-z

Hospital length of stay among children with and without congenital anomalies across 11 European regions—A population-based data linkage study

Author(s): Stine Kjaer Urhoj; Joachim Tan; Joan K. Morris; Joanne Given; Gianni Astolfi; Silvia Baldacci; Ingeborg Barisic; Joanna Brigden; Clara Cavero-Carbonell; Hannah Evans; Mika Gissler; Anna Heino; Sue Jordan; Renée Lutke; Ljubica Odak; Aurora Puccini; Michele Santoro; Ieuan Scanlon; Hermien E. K. de Walle; Diana Wellesley; Óscar Zurriaga; Maria Loane; Ester Garne
Published in: PLoS ONE, Issue 17(7), 2023, ISSN 1932-6203
Publisher: Public Library of Science
DOI: 10.1371/journal.pone.0269874

Exploring Research Priorities of Parents Who Have Children With Down Syndrome, Cleft Lip With or Without Cleft Palate, Congenital Heart Defects, or Spina Bifida Using ConnectEpeople: A Social Media Coproduction Research Study

Author(s): Marlene Sinclair, Julie EM McCullough, David Elliott, Anna Latos-Bielenska, Paula Braz, Clara Cavero-Carbonell, Anna Jamry-Dziurla, Ana João Santos, Lucía Páramo-Rodríguez
Published in: Journal of Medical Internet Research, Issue 21/11, 2019, Page(s) e15847, ISSN 1438-8871
Publisher: Journal of medical Internet Research
DOI: 10.2196/15847

Accuracy of congenital anomaly coding in live birth children recorded in European health care databases, a EUROlinkCAT study

Author(s): Marian K. Bakker; Maria Loane; Ester Garne; Elisa Ballardini; Clara Cavero-Carbonell; Laura García; Mika Gissler; Joanne Given; Anna Heino; Anna Jamry-Dziurla; Sue Jordan; Stine Kjaer Urhoj; Anna Latos-Bieleńska; Elisabeth Limb; Renee Lutke; Amanda J. Neville; Anna Pierini; Michele Santoro; Ieuan Scanlon; Joachim Tan; Diana Wellesley; Hermien E. K. de Walle; Joan K. Morris
Published in: European Journal of Epidemiology, Issue 38, 2023, Page(s) 325–334, ISSN 0393-2990
Publisher: Kluwer Academic Publishers
DOI: 10.21203/rs.3.rs-1879318/v1

EUROlinkCAT protocol for a European population-based data linkage study investigating the survival, morbidity and education of children with congenital anomalies

Author(s): Morris JK, Garne E, Loane M, Barisic I, Densem J, Latos-Bieleńska A, Neville A, Pierini A, Rankin J, Rissmann A, de Walle H, Tan J, Given JE, Claridge H; EUROlinkCAT Consortium.
Published in: BMJ Open, Issue 11(6), 2020, ISSN 2044-6055
Publisher: BMJ Publishing Group
DOI: 10.1136/bmjopen-2020-047859

European study showed that children with congenital anomalies often underwent multiple surgical procedures at different ages across Europe

Author(s): Ester Garne; Maria Loane; Joachim Tan; Elisa Ballardini; Joanna Brigden; Clara Cavero‐Carbonell; Alessio Coi; Mads Damkjær; Laura Garcia‐Villodre; Mika Gissler; Joanne Given; Anna Heino; Sue Jordan; Elizabeth Limb; Amanda Neville; Anke Rissmann; Michele Santoro; Ieuan Scanlon; Stine Kjaer Urhoj; Diana Wellesley; Joan Morris
Published in: Acta Paediatrica, 2023, ISSN 0803-5253
Publisher: Taylor & Francis
DOI: 10.1111/apa.16726

The Voice of Parents of Children With a Congenital Anomaly – A EUROlinkCAT Study

Author(s): Kristina Garne Holm, Amanda Julie Neville, Anna Pierini, Anna Latos Bielenska, Anna Jamry-Dziurla, Clara Cavero-Carbonell, Ester Garne and Jane Clemensen
Published in: Frontiers in Pediatrics, 2021, ISSN 2296-2360
Publisher: Frontiers Media
DOI: 10.3389/fped.2021.654883

Gastrostomy and congenital anomalies: a European population-based study

Author(s): Ester Garne, Joachim Tan, Maria Loane, Silvia Baldacci, Elisa Ballardini, Joanne Brigden, Clara Cavero-Carbonell, Laura García-Villodre, Mika Gissler, Joanne Given, Anna Heino, Sue Jordan, Elizabeth Limb, Amanda Julie Neville, Anke Rissmann, Michele Santoro, leuan Scanlon, Stine Kjaer Urhoj, Diana G Wellesley, Joan Morris
Published in: BMJ Paediatrics Open, 2022, ISSN 2399-9772
Publisher: BMJ
DOI: 10.1136/bmjpo-2022-001526

The quality and the accuracy of codes for terminations of pregnancy for fetal anomalies recorded in hospital databases in three countries in northern Europe

Author(s): Garne E, Urhoj SK, Bakker M, Gissler M, Given J, Heino A, Limb E, Loane M, de Walle H, Morris J.
Published in: Birth Defects Res, Issue 115(3), 2023, ISSN 2472-1727
Publisher: John Wiley and Sons Ltd
DOI: 10.1002/bdr2.2133

Hospital Length of Stay and Surgery among European Children with Rare Structural Congenital Anomalies-A Population-Based Data Linkage Study

Author(s): Ester Garne; Joachim Tan; Mads Damkjaer; Elisa Ballardini; Clara Cavero-Carbonell; Alessio Coi; Laura Garcia-Villodre; Mika Gissler; Joanne Given; Anna Heino; Sue Jordan; Elizabeth Limb; Maria Loane; Amanda J. Neville; Anna Pierini; Anke Rissmann; David Tucker; Stine Kjaer Urhoj; Joan Morris
Published in: Int J Environ Res Public Health, Issue 20(5), 2023, ISSN 1661-7827
Publisher: Multidisciplinary Digital Publishing Institute (MDPI)
DOI: 10.3390/ijerph20054387

Prescriptions for insulin and insulin analogues in children with and without major congenital anomalies: a data linkage cohort study across six European regions

Author(s): Joanne Given; Joan K. Morris; Ester Garne; Elisa Ballardini; Laia Barrachina-Bonet; Clara Cavero-Carbonell; Mika Gissler; Francesca Gorini; Anna Heino; Sue Jordan; Amanda J. Neville; Anna Pierini; Ieuan Scanlon; Joachim Tan; Stine K. Urhoj; Maria Loane
Published in: Eur J Pediatr, 2023, ISSN 0340-6199
Publisher: Springer Verlag
DOI: 10.1007/s00431-023-04885-6

EUROlinkCAT: Common Data Model

Author(s): Maria Loane, James Densem, Joan Morris, Joachim Tan
Published in: International Journal of Population Data Science, Issue 3/2, 2018, ISSN 2399-4908
Publisher: Swansea University
DOI: 10.23889/ijpds.v3i2.537

Deliverables

Publications

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