14 documents found, page 1 of 2
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: ...
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...
Methadone, Pierre Robin sequence and other congenital anomalies: case-control s...
Cleary, Brian; Loane, Maria; Addor, Marie-Claude; Barisic, Ingeborg; de Walle, Hermien E.K.; Matias Dias, Carlos; Gatt, Miriam; Klungsoyr, KariObjective: Methadone is a vital treatment for women with opioid use disorder in pregnancy. Previous reports suggested an association between methadone exposure and Pierre Robin sequence (PRS), a rare craniofacial anomaly. We assessed the association between gestational methadone exposure and PRS. Design/setting: This case-malformed control study used European Surveillance of Congenital Anomalies population-base...
Maternal risk factors for the VACTERL association: a EUROCAT case-control study
van de Putte, Romy; van Rooij, Iris A.L.M.; Haanappel, Cynthia P.; Marcelis, Carlo L.M.; Brunner, Han G.; Addor, Marie‐Claude; Cavero‐Carbonell, ClaraBackground: The VACTERL association (VACTERL) is the nonrandom occurrence of at least three of these congenital anomalies: vertebral, anal, cardiac, tracheoesophageal, renal, and limb anomalies. Despite suggestions for involvement of several genes and nongenetic risk factors from small studies, the etiology of VACTERL remains largely unknown. Objective: To identify maternal risk factors for VACTERL in offspring...
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...
Prevalence of microcephaly in Europe: population based study
Morris, Joan K.; Rankin, Judith; Garne, Ester; Loane, Maria; Greenlees, Ruth; Addor, Marie-Claude; Arriola, Larraitz; Barisic, IngeborgObjectives: To provide contemporary estimates of the prevalence of microcephaly in Europe, determine if the diagnosis of microcephaly is consistent across Europe, and evaluate whether changes in prevalence would be detected using the current European surveillance performed by EUROCAT (the European Surveillance of Congenital Anomalies). Design: Questionnaire and population based observational study. Setting: 24 ...
Meckel–Gruber Syndrome: a population-based study on prevalence, prenatal diagno...
Barisc, Ingeborg; Boban, Ljubica; Loane, Maria; Garne, Ester; Wellesley, Diana; Calzolari, Elisa; Dolk, Helen; Addor, Marie-ClaudeMeckel–Gruber Syndrome is a rare autosomal recessive lethal ciliopathy characterized by the triad of cystic renal dysplasia,occipital encephalocele and postaxial polydactyly. We present the largest population-based epidemiological study to date using data provided by the European Surveillance of Congenital Anomalies (EUROCAT) network. The study population consisted of 191 cases of MKS identified between January...
Long term trends in prevalence of neural tube defects in Europe: population bas...
Khoshnood, Babak; Loane, Maria; Walle, Hermien de; Arriola, Larraitz; Addor, Marie-Claude; Barisic, Ingeborg; Beres, Judit; Bianchi, FabrizioStudy question: What are the long term trends in the total (live births, fetal deaths, and terminations of pregnancy for fetal anomaly) and live birth prevalence of neural tube defects (NTD) in Europe, where many countries have issued recommendations for folic acid supplementation but a policy for mandatory folic acid fortification of food does not exist? Methods: This was a population based, observational stud...
Spectrum of congenital anomalies in pregnancies with pregestational diabetes
Garne, Ester; Loane, Maria; Dolk, Helen; Barisic, Ingeborg; Addor, Marie-Claude; Arriola, Larraitz; Bakker, Marian; Calzolari, ElisaMaternal pregestational diabetes is a well-known risk factor for congenital anomalies. This study analyses the spectrum of congenital anomalies associated with maternal diabetes using data from a large European database for the population-based surveillance of congenital anomalies. METHODS: Data from 18 population-based EUROCAT registries of congenital anomalies in 1990-2005. All malformed cases occurring to mo...
Sex chromosome trisomies in Europe: prevalence, prenatal detection and outcome ...
Boyd, Patricia Anne; Loane, Maria; Garne, Ester; Khoshnood, Babak; Dolk, Helen; EUROCAT working groupThis study aims to assess prevalence and pregnancy outcome for sex chromosome trisomies (SCTs) diagnosed prenatally or in the first year of life. Data held by the European Surveillance of Congenital Anomalies (EUROCAT) database on SCT cases delivered 2000–2005 from 19 population-based registries in 11 European countries covering 2.5 million births were analysed. Cases included were livebirths diagnosed to 1 yea...