25 documents found, page 1 of 3
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...
Severe Congenital Heart Defects and Cerebral Palsy
Garne, Ester; Goldsmith, Shona; Barisic, Ingeborg; Braz, Paula; Dakovic, Ivana; Gibson, Catherine; Hansen, Michele; Hoei-Hansen, Christina E.Objective: To report the prevalence of cerebral palsy (CP) in children with severe congenital heart defects (sCHD) and the outcome/severity of the CP. Methods: Population-based, data linkage study between CP and congenital anomaly registers in Europe and Australia. The EUROCAT definition of severe CHD (sCHD) was used. Linked data from 4 regions in Europe and 2 in Australia were included. All children born in th...
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...
COVID-19 and children with congenital anomalies: a European survey of parents’ ...
Latos-Bieleńska, Anna; Marcus, Elena; Jamry-Dziurla, Anna; Rankin, Judith; Barisic, Ingeborg; Cavero- Carbonell, Clara; Den Hond, Elly; Garne, EsterObjective: To survey parents and carers of children with a congenital anomaly across Europe about their experiences of healthcare services and support during the COVID-19 pandemic. Design: Cross-sectional study. Setting Online survey in 10 European countries, openfrom 8 March 2021 to 14 July 2021.Population: 1070 parents and carers of children aged 0–10 years with a cleft lip, spina bifida, congenital heart def...
Epidemiology of aplasia cutis congenita: A population‐based study in Europe
Coi, Alessio; Barisic, Ingeborg; Garne, Ester; Pierini, Anna; Addor, Marie‐Claude; Aizpurua Atxega, Amaia; Ballardini, Elisa; Braz, PaulaBackground: Aplasia cutis congenita (ACC) is a rare congenital anomaly characterized by localized or widespread absence of skin at birth, mainly affecting the scalp. Most information about ACC exists as individual case reports and medium-sized studies. Objectives: This study aimed to investigate the epidemiology of ACC, using data from a large European network of population-based registries for congenital anoma...
Prevalence of vascular disruption anomalies and association with young maternal...
Morris, Joan K.; Wellesley, Diana; Limb, Elizabeth; Bergman, Jorieke E.H.; Kinsner‐Ovaskainen, Agnieszka; Addor, Marie Claude; Broughan, Jennifer M.Background: Younger mothers are at a greater risk of having a pregnancy with gastroschisis and the risk is higher in the United Kingdom than other European countries. Gastroschisis is thought to be a vascular disruption anomaly and the aim of this study was to analyze the prevalence of other possible vascular disruption anomalies to determine whether both the younger maternal age and the UK associations also oc...
Congenital anomalies in children with postneonatally acquired cerebral palsy: a...
Goldsmith, Shona; McIntyre, Sarah; Scott, Heather; Himmelmann, Kate; Smithers‐Sheedy, Hayley; Andersen, Guro L.; Blair, Eve; Badawi, Nadia; Garne, EsterAim: To describe the major congenital anomalies present in children with postneonatally acquired cerebral palsy (CP), and to compare clinical outcomes and cause of postneonatally acquired CP between children with and without anomalies. Method: Data were linked between total population CP and congenital anomaly registers in five European and three Australian regions for children born 1991 to 2009 (n=468 children...
EUROlinkCAT protocol for a European population-based data linkage study investi...
Morris, Joan K; Garne, Ester; Loane, Maria; Barisic, Ingeborg; Densem, James; Latos-Bieleńska, Anna; Neville, Amanda; Pierini, Anna; Rankin, JudithIntroduction: Congenital anomalies (CAs) are a major cause of infant mortality, childhood morbidity and long-term disability. Over 130 000 children born in Europe every year will have a CA. This paper describes the EUROlinkCAT study, which is investigating the health and educational outcomes of children with CAs for the first 10 years of their lives. Methods and analysis: EUROCAT is a European network of popula...
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 ...