9 documents found, page 1 of 1
Surveillance of multiple congenital anomalies; searching for new associations
Morris, Joan K.; Bergman, Jorieke E.H.; Barisic, Ingeborg; Wellesley, Diana; Tucker, David; Limb, Elizabeth; Addor, Marie-ClaudeMany human teratogens are associated with a spectrum of congenital anomalies rather than a single defect, and therefore the identification of congenital anomalies occurring together more frequently than expected may improve the detection of teratogens. Thirty-two EUROCAT congenital anomaly registries covering 6,599,765 births provided 123,566 cases with one or more major congenital anomalies (excluding chromoso...
Ethics and legal requirements for data linkage in 14 European countries for chi...
Claridge, Hugh; Tan, Joachim; Loane, Maria; Garne, Ester; Barisic, Ingeborg; Cavero-Carbonell, Clara; Matias Dias, Carlos; Gatt, Miriam; Jordan, SusanIntroduction: 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 can be complex. This paper documents the processes required by the EUROlinkCAT study investigators to research the health and survival of children with congenital anomalies in Europe. Methods: ...
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...
Prevention of Neural Tube Defects in Europe: A Public Health Failure
Morris, Joan K.; Addor, Marie-Claude; Ballardini, Elisa; Barisic, Ingeborg; Barrachina-Bonet, Laia; Braz, Paula; Cavero-Carbonell, Clara; Den Hond, EllyObjective: Thirty years ago it was demonstrated that folic acid taken before pregnancy and in early pregnancy reduced the risk of a neural tube defect (NTD). Despite Public Health Initiatives across Europe recommending that women take 0.4 mg folic acid before becoming pregnant and during the first trimester, the prevalence of NTD pregnancies has not materially decreased in the EU since 1998, in contrast to the ...
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...
Exploring Research Priorities of Parents Who Have Children With Down Syndrome, ...
Sinclair, Marlene; McCullough, Julie E.M.; Elliott, David; Latos-Bielenska, Anna; Braz, Paula; Cavero-Carbonell, Clara; Jamry-Dziurla, AnnaBackground: Using social media for research purposes is novel and challenging in terms of recruitment, participant knowledge about the research process, and ethical issues. This paper provides insight into the recruitment of European parents of children with specific congenital anomalies to engage in coproduction research by using social media. Secret Facebook groups, providing optimal security, were set up for...
Epidemiology of congenital cerebral anomalies in Europe: a multicentre, populat...
Morris, Joan K.; Wellesley, Diana G.; Barisic, Ingeborg; Addor, Marie-Claude; Bergman, Jorieke E.H.; Braz, Paula; Cavero-Carbonell, ClaraObjectives: To describe the epidemiology and geographical differences in prevalence of congenital cerebral anomalies in Europe. Design and setting: Congenital cerebral anomalies (International Classification of Diseases, 10th Revision code Q04) recorded in 29 population-based EUROCAT registries conducting surveillance of 1.7 million births per annum (29% of all European births). Participants: All birth outcomes...
Spectrum of congenital anomalies among VACTERL cases: a EUROCAT population-base...
van de Putte, Romy; van Rooij, Iris A.L.M.; Marcelis, Carlo L.M.; Guo, Michel; Brunner, Han G.; Addor, Marie-Claude; Cavero-Carbonell, ClaraBackground: The VACTERL (Vertebral anomalies, Anal atresia, Cardiac malformations, Tracheo-Esophageal fistula, Renal anomalies, Limb abnormalities) association is the non-random occurrence of at least three of these congenital anomalies: vertebral, anal, cardiac, tracheo-esophageal, renal, and limb anomalies. Diagnosing VACTERL patients is difficult, as many disorders have multiple features in common with VACTE...
Epidemiology of septo-optic dysplasia with focus on prevalence and maternal age...
Garne, Ester; Rissmann, Anke; Addor, Marie-Claude; Barisic, Ingeborg; Bergman, Jorieke; Braz, Paula; Cavero-Carbonell, Clara; Draper, ElisabethSepto-optic nerve dysplasia is a rare congenital anomaly with optic nerve hypoplasia, pituitary hormone deficiencies and midline developmental defects of the brain. The clinical findings are visual impairment, hypopituitarism and developmental delays. The aim of this study was to report prevalence, associated anomalies, maternal age and other epidemiological factors from a large European population based networ...