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

Deliverables

Interactive website tables

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

Report on geographical variations in Europe on survival of children born with a congenital anomaly

Manual describing data held in the Central Results Registry

Manual describing data held in the Central Results Registry

Report on prenatal diagnosis and morbidity

Report on prenatal diagnosis and morbidity

Report on survival and risk factors for survival for children born with a congenital anomaly

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 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 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

Report on Infections and use of antibiotics during the first 5 years of life

Formation of e stakeholder forum “ConnectEpeople”

Formation of e stakeholder forum “ConnectEpeople”

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

Searching for OpenAIRE data...

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, 113, 2021, Page(s) 1431-1462, ISSN 2472-1727
Publisher: Wiley
DOI: 10.1002/bdr2.1961

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

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

Author(s): Nathalie Lelong; Babak Khoshnood; David Tucker; Mika Gissler; Maria Loane; Ingeborg Barisic; Miriam Gatt; Kari Klungsoyr; Amanda Neville; Anna Pierini; Anke Rissmann; Oscar Zurriaga; Joan K Morris; Paula Braz; Vera Nelen; Judith Rankin; Ester Garne; Sue Jordan; Anna Heino; Silvia Baldacci; Michele Santoro; Alessio Coi; Lorena Mezzasalma; Daniel Thayer; Svetlana V Glinianaia; Hermien de Walle; Guy
Published in: BMJ Open, 11(6). BMJ PUBLISHING GROUP, 1, 2021, ISSN 2044-6055
Publisher: BMJ Publishing Group
DOI: 10.1136/bmjopen-2020-047859

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, 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, 16(8), 2021, Page(s) 1-15, ISSN 1932-6203
Publisher: Public Library of Science
DOI: 10.1371/journal.pone.0256535

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, 21/11, 2019, Page(s) e15847, ISSN 1438-8871
Publisher: Journal of medical Internet Research
DOI: 10.2196/15847

a multi-registry cohort study

Author(s): Alessio Coi; Michele Santoro; Anna Pierini; Judith Rankin; Svetlana V. Glinianaia; Joachim Tan; Abigail-Kate Reid; Ester Garne; Maria Loane; Joanne Given; Elisa Ballardini; Clara Cavero-Carbonell; Hermien E. K. de Walle; Miriam Gatt; Laura García-Villodre; Mika Gissler; Sue Jordan; Sonja Kiuru-Kuhlefelt; Stine Kjaer Urhoj; Kari Klungsøyr; Nathalie Lelong; L. Renée Lutke; Amanda J. Neville; Maka
Published in: Coi , A , Santoro , M , Pierini , A , Rankin , J , Glinianaia , S , Tan , J , Reid , A-K , Garne , E , Loane , M , Given , J , Ballardini , E , Cavero-Carbonell , C , de Walle , H E K , Gatt , M , Garcia-Villodre , L , Gissler , M , Jordan , S , Kiuru-Kuhlefelt , S , Urhøj , S K , Klungsoyr , K , Lelong , N , Lutke , L R , Neville , A J , Rahshenas , M , Scanlon , I , Wellesley , D & Morris , J K, 17, 2022, ISSN 1750-1172
Publisher: BioMed Central
DOI: 10.1186/s13023-022-02292-y

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

EUROlinkCAT: Common Data Model

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