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Support Needs of Parents of Children With Congenital Anomalies Across Europe: A...
Marcus, Elena; Latos-Bielenska, Anna; Jamry-Dziurla, Anna; Barišić, Ingeborg; Cavero-Carbonell, Clara; Den Hond, Elly; Garne, Ester; Genard, LucasBackground: Parents and carers of children with congenital anomalies can experience stress when managing their child's healthcare needs. It is important that they are well supported. This study explored the support needs of parents/carers of children with a congenital anomaly across Europe. Methods: We developed a cross-sectional online survey to measure parents' experiences of support at diagnosis and in subse...
Information needs of parents of children with congenital anomalies across Europ...
Marcus, Elena; Latos-Bielenska, Anna; Jamry-Dziurla, Anna; Barišić, Ingeborg; Cavero-Carbonell, Clara; Den Hond, Elly; Garne, Ester; Genard, LucasBackground: Parents of children who have a congenital anomaly can experience significant worry about their child's health. Access to clear, helpful, and trustworthy information can provide a valuable source of support. In this study the aim was to explore the information needs of parents/carers of children with congenital anomalies across Europe. Method: A cross-sectional online survey was developed in nine lan...
Amniotic band syndrome and limb body wall complex in Europe 1980-2019
Bergman, Jorieke E.H.; Barišić, Ingeborg; Addor, Marie‐Claude; Braz, Paula; Cavero‐Carbonell, Clara; Draper, Elizabeth S.Amniotic band syndrome (ABS) and limb body wall complex (LBWC) have an overlapping phenotype of multiple congenital anomalies and their etiology is unknown. We aimed to determine the prevalence of ABS and LBWC in Europe from 1980 to 2019and to describe the spectrum of congenital anomalies. In addition, we investigated maternal age and multiple birth as possible risk factors for the occurrence of ABS and LBWC. W...
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, PaulaBackground: 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 using a cohort of cases from EUROCAT, the European network of population-based registries of congenital anomalies. Methods: We analysed cases of PRS born in the period 1998-2017 collected by 29 ...
Epidemiology of Dandy-Walker Malformation in Europe: A EUROCAT Population-Based...
Santoro, Michele; Coi, Alessio; Barišić, Ingeborg; Garne, Ester; Addor, Marie-Claude; Bergman, Jorieke E.H.; Bianchi, Fabrizio; Boban, LjubicaBackground: 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 investigate the epidemiology of DW malformation, using data from the European population-based registries of congenital anomalies in the European Surveillance of Congenital Anomalies network. Method...
Epidemiology of achondroplasia: a population‐based study in Europe
Coi, Alessio; Santoro, Michele; Garne, Ester; Pierini, Anna; Addor, Marie‐Claude; Alessandri, Jean‐Luc; Bergman, Jorieke E.H.; Bianchi, FabrizioAchondroplasia is a rare genetic disorder resulting in short-limb skeletal dysplasia. We present the largest European population-based epidemiological study to date using data provided by the European Surveillance of Congenital Anomalies (EUROCAT) network. All cases of achondroplasia notified to 28 EUROCAT registries (1991-2015) were included in the study. Prevalence, birth outcomes, prenatal diagnosis, associa...