• Epidemiology of Dandy-Walker malformation in Europe: A EUROCAT population-based registry study 

      Santoro, Michele; Coi, Alessio; Barišić, Ingeborg; Garne, Ester; Addor, Marie-Claude; Bergman, Jorieke E.H.; Bianchi, Fabrizio; Boban, Ljubica; Braz, Paula; Cavero-Carbonell, Clara; Gatt, Miriam; Haeusler, Martin; Kinsner-Ovaskainen, Agnieszka; Klungsøyr, Kari; Kurinczuk, Jennifer J.; Lelong, Nathalie; Luyt, Karen; Materna-Kiryluk, Anna; Mokoroa, Olatz; Mullaney, Carmel; Nelen, Vera; Neville, Amanda Julie; O'Mahony, Mary T.; Perthus, Isabelle; Randrianaivo, Hanitra; Rankin, Judith; Rissmann, Anke; Rouget, Florence; Schaub, Bruno; Tucker, David; Wellesley, Diana; Yevtushok, Lyubov; Pierini, Anna (Peer reviewed; Journal article, 2019)
      Background: Dandy-Walker (DW) malformation is a rare and severe congenital anomaly of the posterior fossa affecting the development of the cerebellum and the fourth ventricle. Objective: The aim of this study was to ...
    • Epidemiology of Pierre-Robin sequence in Europe: A population-based EUROCAT study 

      Santoro, Michele; Coi, Alessio; Barišić, Ingeborg; Pierini, Anna; Addor, Marie-Claude; Baldacci, Silvia; Ballardini, Elisa; Boban, Ljubica; Braz, Paula; Cavero-Carbonell, Clara; de Walle, Hermien E.K.; Draper, Elizabeth S.; Gatt, Miriam; Haeusler, Martin; Klungsøyr, Kari; Kurinczuk, Jennifer J.; Materna-Kiryluk, Anna; Lanzoni, Monica; Lelong, Nathalie; Luyt, Karen; Mokoroa, Olatz; Mullaney, Carmel; Nelen, Vera; O'Mahony, Mary T.; Perthus, Isabelle; Randrianaivo, Hanitra; Rankin, Judith; Rissmann, Anke; Rouget, Florence; Schaub, Bruno; Tucker, David; Wellesley, Diana; Zymak-Zakutnia, Nataliia; Garne, Ester (Journal article; Peer reviewed, 2021)
      Background Pierre Robin sequence (PRS) is a rare congenital anomaly. Respiratory disorders and feeding difficulties represent the main burden. Objective The aim of this study was to investigate the epidemiology of PRS ...
    • Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records: A EUROlinkCAT study 

      Loane, Maria; Given, Joanne E.; Tan, J.; Reid, A.; Akhmedzhanova, D.; Astolfi, G.; Barisic, Ingeborg; Bertille, N.; Bonet, L.B.; Cavero-Carbonell, Clara; Carollo, O. Mokoroa; Coi, Alessio; Densem, J.; Draper, Elizabeth S.; Garne, Ester; Gatt, Miriam; Glinianaia, S.V.; Heino, Anna; Hond, E. Den; Jordan, Sue; Khoshnood, Babak; Kiuru-Kuhlefelt, S.; Klungsøyr, Kari; Lelong, Nathalie; Lutke, L.R.; Neville, Amanda J.; Ostapchuk, L.; Puccini, Aurora; Rissmann, Anke; Santoro, Michele; Scanlon, I.; Thys, G.; Tucker, David; Urhoj, Stine Kjaer; De Walle, H. E. K.; Wellesley, Diana; Zurriaga, O.; Morris, Joan K. (Journal article; Peer reviewed, 2021)
      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 ...
    • 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 ...