• The burden of disease for children born alive with Turner syndrome—A European cohort study 

      Andersen, Ann-Louise Rud; Urhoj, Stine Kjaer; Tan, Joachim; Cavero-Carbonell, Clara; Gatt, Miriam; Gissler, Mika; Klungsøyr, Kari; Khoshnood, Babak; Morris, Joan; Neville, Amanda J.; Pierini, Anna; Scanlon, Ieuan; de Walle, Hermien E. K.; Wellesley, Diana; Garne, Ester; Loane, Maria (Journal article; Peer reviewed, 2023)
      Background Turner syndrome is a rare congenital anomaly caused by complete or partial X chromosome monosomy that may affect mortality and morbidity in childhood. Methods This population-based data-linkage cohort study, ...
    • Causes of death in children with congenital anomalies up to age 10 in eight European countries 

      Rissmann, Anke; Tan, Joachim; Glinianaia, Svetlana V; Rankin, Judith; Pierini, Anna; Santoro, Michele; Coi, Alessio; Garne, Ester; Loane, Maria; Given, Joanne; Reid, Abigail; Aizpurua, Amaia; Akhmedzhanova, Diana; Ballardini, Elisa; Barisic, Ingeborg; Cavero-Carbonell, Clara; De Walle, Hermien E K; Gatt, Miriam; Gissler, Mika; Heino, Anna; Jordan, Sue; Urhoj, Stine Kjaer; Klungsøyr, Kari; Lutke, Renee; Mokoroa, Olatz; Neville, Amanda Julie; Thayer, Daniel S; Wellesley, Diana G; Yevtushok, Lyubov; Zurriaga, Oscar; Morris, Joan (Journal article; Peer reviewed, 2023)
      Background Congenital anomalies (CAs) increase the risk of death during infancy and childhood. This study aimed to evaluate the accuracy of using death certificates to estimate the burden of CAs on mortality for children ...
    • Ethics and legal requirements for data linkage in 14 European countries for children with congenital anomalies 

      Claridge, Hugh; Tan, Joachim; Loane, Maria; Garne, Ester; Barisic, Ingeborg; Cavero-Carbonell, Clara; Dias, Carlos; Gatt, Miriam; Jordan, Susan; Khoshnood, Babak; Kiuru-Kuhlefelt, Sonja; Klungsøyr, Kari; Mokoroa Carollo, Olatz; Nelen, Vera; Neville, Amanda J.; Pierini, Anna; Randrianaivo, Hanitra; Rissmann, Anke; Tucker, David; De Walle, Hermien; Wertelecki, Wladimir; Morris, Joan K. (Journal article; Peer reviewed, 2023)
      Introduction: Linking healthcare data sets can create valuable resources for research, particularly when investigating rare exposures or outcomes. However, across Europe, the permissions processes required to access data ...
    • Survival of children with rare structural congenital anomalies: a multi-registry cohort study 

      Coi, Alessio; Santoro, Michele; Pierini, Anna; Rankin, Judith; Glinianaia, Svetlana V.; Tan, Joachim; Reid, Abigail-Kate; Garne, Ester; Loane, Maria; Given, Joanne; Ballardini, Elisa; Cavero-Carbonell, Clara; de Walle, Hermien E.K.; Gatt, Miriam; García-Villodre, Laura; Gissler, Mika; Jordan, Sue; Kiuru-Kuhlefelt, Sonja; Kjaer Urhoj, Stine; Klungsøyr, Kari; Lelong, Nathalie; Lutke, L. Renée; Neville, Amanda J.; Rahshenas, Makan; Scanlon, Ieuan; Wellesley, Diana; Morris, Joan K. (Journal article; Peer reviewed, 2022)
      Background Congenital anomalies are the leading cause of perinatal, neonatal and infant mortality in developed countries. Large long-term follow-up studies investigating survival beyond the first year of life in children ...
    • Survival, hospitalisation and surgery in children born with Pierre Robin sequence: a European population-based cohort study 

      Santoro, Michele; Garne, Ester; Coi, Alessio; Tan, Joachim; Loane, Maria; Ballardini, Elisa; Cavero-Carbonell, Clara; de Walle, Hermien E.K.; Gatt, Miriam; Gissler, Mika; Jordan, Sue; Klungsøyr, Kari; Lelong, Natalie; Urhoj, Stine Kjaer; Wellesley, Diana G.; Morris, Joan K. (Journal article; Peer reviewed, 2023)
      Objective: To evaluate survival, hospitalisations and surgical procedures for children born with Pierre Robin sequence (PRS) across Europe. Design: Multicentre population-based cohort study. Setting: Data on 463 live ...
    • Temporal and geographical variations in survival of children born with congenital anomalies in Europe: A multi-registry cohort study 

      Santoro, Michele; Coi, Alessio; Pierini, Anna; Rankin, Judith; Glinianaia, Svetlana V.; Tan, Joachim; Reid, Abigail; Garne, Ester; Loane, Maria; Given, Joanne; Aizpurua, Amaia; Astolfi, Gianni; Barisic, Ingeborg; Cavero-Carbonell, Clara; de Walle, Hermien E. K.; Den Hond, Elly; García-Villodre, Laura; Gatt, Miriam; Gissler, Mika; Jordan, Sue; Khoshnood, Babak; Kiuru-Kuhlefelt, Sonja; Klungsøyr, Kari; Lelong, Nathalie; Lutke, Renée; Mokoroa, Olatz; Nelen, Vera; Neville, Amanda J.; Odak, Ljubica; Rissmann, Anke; Scanlon, Ieuan; Urhoj, Stine Kjaer; Wellesley, Diana; Wertelecki, Wladimir; Yevtushok, Lyubov; Morris, Joan K. (Journal article; Peer reviewed, 2022)
      Background: Congenital anomalies are a major cause of perinatal, neonatal and infant mortality. Objectives: The aim was to investigate temporal changes and geographical variation in survival of children with major ...
    • Ten-year survival of children with trisomy 13 or trisomy 18: A multi-registry European cohort study 

      Glinianaia, Svetlana V.; Rankin, Judith; Tan, Joachim; Loane, Maria; Garne, Ester; Cavero-Carbonell, Clara; De Walle, Hermien E. K.; Gatt, Miriam; Gissler, Mika; Klungsøyr, Kari; Lelong, Natalie; Neville, Amanda; Pierini, Anna; Tucker, David F.; Urhoj, Stine Kjaer; Wellesley, Diana Gay; Morris, Joan K. (Journal article; Peer reviewed, 2023)
      Objective: To investigate the survival to 10 years of age of children with trisomy 13 (T13) and children with trisomy 18 (T18), born 1995–2014. Design: Population-based cohort study that linked mortality data to data ...