38 results on '"Scanlon, Ieuan"'
Search Results
2. Prescriptions for insulin and insulin analogues in children with and without major congenital anomalies: a data linkage cohort study across six European regions
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Given, Joanne, Morris, Joan K., Garne, Ester, Ballardini, Elisa, Barrachina-Bonet, Laia, Cavero-Carbonell, Clara, Gissler, Mika, Gorini, Francesca, Heino, Anna, Jordan, Sue, Neville, Amanda J., Pierini, Anna, Scanlon, Ieuan, Tan, Joachim, Urhoj, Stine K., and Loane, Maria
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- 2023
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3. Accuracy of congenital anomaly coding in live birth children recorded in European health care databases, a EUROlinkCAT study
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Bakker, Marian K., Loane, Maria, Garne, Ester, Ballardini, Elisa, Cavero-Carbonell, Clara, García, Laura, Gissler, Mika, Given, Joanne, Heino, Anna, Jamry-Dziurla, Anna, Jordan, Sue, Urhoj, Stine Kjaer, Latos-Bieleńska, Anna, Limb, Elisabeth, Lutke, Renee, Neville, Amanda J., Pierini, Anna, Santoro, Michele, Scanlon, Ieuan, Tan, Joachim, Wellesley, Diana, de Walle, Hermien E. K., and Morris, Joan K.
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- 2023
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4. Survival of children with rare structural congenital anomalies: a multi-registry cohort study
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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, and Morris, Joan K.
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- 2022
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5. Antiasthmatic prescriptions in children with and without congenital anomalies: a population-based study
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Divin, Natalie, primary, Given, Joanne Emma, additional, Tan, Joachim, additional, Astolfi, Gianni, additional, Ballardini, Elisa, additional, Barrachina-Bonet, Laia, additional, Cavero-Carbonell, Clara, additional, Coi, Alessio, additional, Garne, Ester, additional, Gissler, Mika, additional, Heino, Anna, additional, Jordan, Susan, additional, Pierini, Anna, additional, Scanlon, Ieuan, additional, Urhøj, Stine Kjær, additional, Morris, Joan K, additional, and Loane, Maria, additional
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- 2023
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6. Creating a population-based cohort of children born with and without congenital anomalies using birth data matched to hospital discharge databases in 11 European regions: Assessment of linkage success and data quality
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Loane, Maria, primary, Given, Joanne E., additional, Tan, Joachim, additional, Barišić, Ingeborg, additional, Barrachina-Bonet, Laia, additional, Cavero-Carbonell, Clara, additional, Coi, Alessio, additional, Densem, James, additional, Garne, Ester, additional, Gissler, Mika, additional, Heino, Anna, additional, Jordan, Sue, additional, Lutke, Renee, additional, Neville, Amanda J., additional, Odak, Ljubica, additional, Puccini, Aurora, additional, Santoro, Michele, additional, Scanlon, Ieuan, additional, Urhoj, Stine K., additional, de Walle, Hermien E. K., additional, Wellesley, Diana, additional, and Morris, Joan K., additional
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- 2023
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7. The burden of disease for children born alive with Turner syndrome—A European cohort study
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Andersen, Ann‐Louise Rud, primary, Urhoj, Stine Kjaer, additional, Tan, Joachim, additional, Cavero‐Carbonell, Clara, additional, Gatt, Miriam, additional, Gissler, Mika, additional, Klungsoyr, Kari, additional, Khoshnood, Babak, additional, Morris, Joan, additional, Neville, Amanda J., additional, Pierini, Anna, additional, Scanlon, Ieuan, additional, de Walle, Hermien E. K., additional, Wellesley, Diana, additional, Garne, Ester, additional, and Loane, Maria, additional
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- 2023
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8. Timing of Cardiac Surgical Interventions and Postoperative Mortality in Children With Severe Congenital Heart Defects Across Europe: Data From the EUROlinkCAT Study.
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Damkjær, Mads, Garne, Ester, Loane, Maria, Urhoj, Stine K., Ballardini, Elisa, Cavero-Carbonell, Clara, Coi, Alessio, García-Villodre, Laura, Given, Joanne, Gissler, Mika, Heino, Anna, Jordan, Sue, Limb, Elizabeth, Neville, Amanda J., Pierini, Anna, Rissmann, Anke, Tan, Joachim, Scanlon, Ieuan, and Morris, Joan K.
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- 2023
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9. European study showed that children with congenital anomalies often underwent multiple surgical procedures at different ages across Europe
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Garne, Ester, primary, Loane, Maria, additional, Tan, Joachim, additional, Ballardini, Elisa, additional, Brigden, Joanna, additional, Cavero‐Carbonell, Clara, additional, Coi, Alessio, additional, Damkjær, Mads, additional, Garcia‐Villodre, Laura, additional, Gissler, Mika, additional, Given, Joanne, additional, Heino, Anna, additional, Jordan, Sue, additional, Limb, Elizabeth, additional, Neville, Amanda, additional, Rissmann, Anke, additional, Santoro, Michele, additional, Scanlon, Ieuan, additional, Urhoj, Stine Kjaer, additional, Wellesley, Diana, additional, and Morris, Joan, additional
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- 2023
- Full Text
- View/download PDF
10. Antiasthmatic prescriptions in children with and without congenital anomalies:a population-based study
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Divin, Natalie, Given, Joanne Emma, Tan, Joachim, Astolfi, Gianni, Ballardini, Elisa, Barrachina-Bonet, Laia, Cavero-Carbonell, Clara, Coi, Alessio, Garne, Ester, Gissler, Mika, Heino, Anna, Jordan, Susan, Pierini, Anna, Scanlon, Ieuan, Urhøj, Stine Kjær, Morris, Joan K, Loane, Maria, Divin, Natalie, Given, Joanne Emma, Tan, Joachim, Astolfi, Gianni, Ballardini, Elisa, Barrachina-Bonet, Laia, Cavero-Carbonell, Clara, Coi, Alessio, Garne, Ester, Gissler, Mika, Heino, Anna, Jordan, Susan, Pierini, Anna, Scanlon, Ieuan, Urhøj, Stine Kjær, Morris, Joan K, and Loane, Maria
- Abstract
OBJECTIVES: To explore the risk of being prescribed/dispensed medications for respiratory symptoms and breathing difficulties in children with and without congenital anomalies.DESIGN: A EUROlinkCAT population-based data linkage cohort study. Data on children with and without congenital anomalies were linked to prescription databases to identify children who did/did not receive antiasthmatic prescriptions. Data were analysed by age, European region, class of antiasthmatic, anomaly, sex, gestational age and birth cohort.SETTING: Children born 2000-2014 in six regions within five European countries.PARTICIPANTS: 60 662 children with congenital anomalies and 1 722 912 reference children up to age 10 years.PRIMARY OUTCOME MEASURE: Relative risks (RR) of >1 antiasthmatic prescription in a year, identified using Anatomical Therapeutic Chemical classification codes beginning with R03.RESULTS: There were significant differences in the prescribing of antiasthmatics in the six regions. Children with congenital anomalies had a significantly higher risk of being prescribed antiasthmatics (RR 1.41, 95% CI 1.35 to 1.48) compared with reference children. The increased risk was consistent across all regions and all age groups. Children with congenital anomalies were more likely to be prescribed beta-2 agonists (RR 1.71, 95% CI 1.60 to 1.83) and inhaled corticosteroids (RR 1.74, 95% CI 1.61 to 1.87). Children with oesophageal atresia, genetic syndromes and chromosomal anomalies had over twice the risk of being prescribed antiasthmatics compared with reference children. Children with congenital anomalies born <32 weeks gestational age were over twice as likely to be prescribed antiasthmatics than those born at term (RR 2.20, 95% CI 2.10 to 2.30).CONCLUSION: This study documents the additional burden of respiratory symptoms and breathing difficulties for children with congenital anomalies, particularly those born preterm, compared with
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- 2023
11. The burden of disease for children born alive with Turner syndrome-A European cohort study
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Andersen, Ann-Louise Rud, Urhoj, Stine Kjaer, Tan, Joachim, Cavero-Carbonell, Clara, Gatt, Miriam, Gissler, Mika, Klungsoyr, Kari, Khoshnood, Babak, Morris, Joan, Neville, Amanda J, Pierini, Anna, Scanlon, Ieuan, de Walle, Hermien E K, Wellesley, Diana, Garne, Ester, Loane, Maria, Andersen, Ann-Louise Rud, Urhoj, Stine Kjaer, Tan, Joachim, Cavero-Carbonell, Clara, Gatt, Miriam, Gissler, Mika, Klungsoyr, Kari, Khoshnood, Babak, Morris, Joan, Neville, Amanda J, Pierini, Anna, Scanlon, Ieuan, de Walle, Hermien E K, Wellesley, Diana, Garne, Ester, and Loane, Maria
- Abstract
BACKGROUND: Turner syndrome is a rare congenital anomaly caused by complete or partial X chromosome monosomy that may affect mortality and morbidity in childhood.METHODS: This population-based data-linkage cohort study, as part of the EUROlinkCAT project, investigated mortality and morbidity for the first 5 years of life for liveborn European children diagnosed with Turner syndrome. Thirteen population-based registries in 10 countries from the European surveillance of congenital anomalies (EUROCAT) network participated. Data on children born 1995-2014 and diagnosed with Turner syndrome were linked to mortality, hospital and prescription records. Children with any congenital anomaly and children without a congenital anomaly were included for comparison on morbidity.RESULTS: Out of a population of 5.8 million livebirths 404 were diagnosed with Turner syndrome prenatally or in infancy and 95.5% survived to their fifth birthday. During the first year of life 72.3% (95% CI 59.5;81.6) of children with Turner syndrome were hospitalized, the median length of stay was 5.6 days (95% CI 3.5;7.7) and 18.7% (95% CI 13.9;23.9) underwent surgery. After the first year of life hospitalizations and length of stay decreased but more children underwent surgery (30.8% [95% CI 17.6;44.7]). In the first 5 years the percentage of children with Turner syndrome having a prescription for antibiotics was 12%-20% per year and increased with the age of child.CONCLUSIONS: In the first year of life, the burden of disease was relatively high for children with Turner syndrome. The outlook is more positive beyond the first year, though overall morbidity still exceeded that of children without congenital anomalies.
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- 2023
12. Creating a population-based cohort of children born with and without congenital anomalies using birth data matched to hospital discharge databases in 11 European regions:Assessment of linkage success and data quality
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Loane, Maria, Given, Joanne E, Tan, Joachim, Barišić, Ingeborg, Barrachina-Bonet, Laia, Cavero-Carbonell, Clara, Coi, Alessio, Densem, James, Garne, Ester, Gissler, Mika, Heino, Anna, Jordan, Sue, Lutke, Renee, Neville, Amanda J, Odak, Ljubica, Puccini, Aurora, Santoro, Michele, Scanlon, Ieuan, Urhoj, Stine K, de Walle, Hermien E K, Wellesley, Diana, Morris, Joan K, Loane, Maria, Given, Joanne E, Tan, Joachim, Barišić, Ingeborg, Barrachina-Bonet, Laia, Cavero-Carbonell, Clara, Coi, Alessio, Densem, James, Garne, Ester, Gissler, Mika, Heino, Anna, Jordan, Sue, Lutke, Renee, Neville, Amanda J, Odak, Ljubica, Puccini, Aurora, Santoro, Michele, Scanlon, Ieuan, Urhoj, Stine K, de Walle, Hermien E K, Wellesley, Diana, and Morris, Joan K
- Abstract
Linking routinely collected healthcare administrative data is a valuable method for conducting research on morbidity outcomes, but linkage quality and accuracy needs to be assessed for bias as the data were not collected for research. The aim of this study was to describe the rates of linking data on children with and without congenital anomalies to regional or national hospital discharge databases and to evaluate the quality of the matched data. Eleven population-based EUROCAT registries participated in a EUROlinkCAT study linking data on children with a congenital anomaly and children without congenital anomalies (reference children) born between 1995 and 2014 to administrative databases including hospital discharge records. Odds ratios (OR), adjusted by region, were estimated to assess the association of maternal and child characteristics on the likelihood of being matched. Data on 102,654 children with congenital anomalies were extracted from 11 EUROCAT registries and 2,199,379 reference children from birth registers in seven regions. Overall, 97% of children with congenital anomalies and 95% of reference children were successfully matched to administrative databases. Information on maternal age, multiple birth status, sex, gestational age and birthweight were >95% complete in the linked datasets for most regions. Compared with children born at term, those born at ≤27 weeks and 28-31 weeks were less likely to be matched (adjusted OR 0.23, 95% CI 0.21-0.25 and adjusted OR 0.75, 95% CI 0.70-0.81 respectively). For children born 32-36 weeks, those with congenital anomalies were less likely to be matched (adjusted OR 0.78, 95% CI 0.71-0.85) while reference children were more likely to be matched (adjusted OR 1.28, 95% CI 1.24-1.32). Children born to teenage mothers and mothers ≥35 years were less likely to be matched compared with mothers aged 20-34 years (adjusted ORs 0.92, 95% CI 0.88-0.96; and 0.87, 95% CI 0.86-0.89 respectively). The accuracy of linkage an
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- 2023
13. Prescriptions for insulin and insulin analogues in children with and without major congenital anomalies:a data linkage cohort study across six European regions
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Given, Joanne, Morris, Joan K, Garne, Ester, Ballardini, Elisa, Barrachina-Bonet, Laia, Cavero-Carbonell, Clara, Gissler, Mika, Gorini, Francesca, Heino, Anna, Jordan, Sue, Neville, Amanda J, Pierini, Anna, Scanlon, Ieuan, Tan, Joachim, Urhoj, Stine K, Loane, Maria, Given, Joanne, Morris, Joan K, Garne, Ester, Ballardini, Elisa, Barrachina-Bonet, Laia, Cavero-Carbonell, Clara, Gissler, Mika, Gorini, Francesca, Heino, Anna, Jordan, Sue, Neville, Amanda J, Pierini, Anna, Scanlon, Ieuan, Tan, Joachim, Urhoj, Stine K, and Loane, Maria
- Abstract
UNLABELLED: Are children with major congenital anomalies more likely to develop diabetes requiring insulin therapy, as indicated by prescriptions for insulin, than children without congenital anomalies? The aim of this study is to evaluate prescription rates of insulin/insulin analogues in children aged 0-9 years with and without major congenital anomalies. A EUROlinkCAT data linkage cohort study, involving six population-based congenital anomaly registries in five countries. Data on children with major congenital anomalies (60,662) and children without congenital anomalies (1,722,912), the reference group, were linked to prescription records. Birth cohort and gestational age were examined. The mean follow-up for all children was 6.2 years. In children with congenital anomalies aged 0-3 years, 0.04 per 100 child-years (95% CIs 0.01-0.07) had > 1 prescription for insulin/insulin analogues compared with 0.03 (95% CIs 0.01-0.06) in reference children, increasing ten-fold by age 8-9 years. The risk of > 1 prescription for insulin/insulin analogues aged 0-9 years in children with non-chromosomal anomalies (RR 0.92, 95% CI 0.84-1.00) was similar to that of reference children. However, children with chromosomal anomalies (RR 2.37, 95% CI 1.91-2.96), and specifically children with Down syndrome (RR 3.44, 95% CIs 2.70-4.37), Down syndrome with congenital heart defects (RR 3.86, 95% CIs 2.88-5.16) and Down syndrome without congenital heart defects (RR 2.78, 95% CIs 1.82-4.27), had a significantly increased risk of > 1 prescription for insulin/insulin analogues aged 0-9 years compared to reference children. Female children had a reduced risk of > 1 prescription aged 0-9 years compared with male children (RR 0.76, 95% CI 0.64-0.90 for children with congenital anomalies and RR 0.90, 95% CI 0.87-0.93 for reference children). Children without congenital anomalies born preterm (< 37 weeks) were more likely to have > 1 insulin/insulin analogue prescription compa
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- 2023
14. European study showed that children with congenital anomalies often underwent multiple surgical procedures at different ages across Europe
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Garne, Ester, Loane, Maria, Tan, Joachim, Ballardini, Elisa, Brigden, Joanna, Cavero-Carbonell, Clara, Coi, Alessio, Damkjaer, Mads, Garcia-Villodre, Laura, Gissler, Mika, Given, Joanne, Heino, Anna, Jordan, Sue, Limb, Elizabeth, Neville, Amanda, Rissmann, Anke, Santoro, Michele, Scanlon, Ieuan, Urhoj, Stine Kjaer, Wellesley, Diana, Morris, Joan, Garne, Ester, Loane, Maria, Tan, Joachim, Ballardini, Elisa, Brigden, Joanna, Cavero-Carbonell, Clara, Coi, Alessio, Damkjaer, Mads, Garcia-Villodre, Laura, Gissler, Mika, Given, Joanne, Heino, Anna, Jordan, Sue, Limb, Elizabeth, Neville, Amanda, Rissmann, Anke, Santoro, Michele, Scanlon, Ieuan, Urhoj, Stine Kjaer, Wellesley, Diana, and Morris, Joan
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AIM: Children with congenital anomalies often require surgery but data on the burden of surgery for these children are limited.METHODS: A population-based record-linkage study in Finland, Wales and regions of Denmark, England, Italy and Spain. A total of 91,504 children with congenital anomalies born in 1995-2014 were followed to their tenth birthday or the end of 2015. Electronic linkage to hospital databases provided data on in-patient surgical procedures and meta-analyses of surgical procedures were performed by age groups.RESULTS: The percentage of children having surgery in the first year was 38% with some differences across regions and 14% also underwent surgery at age 1-4 years. Regional differences in age at the time of their first surgical procedure were observed for children with cleft palate, hydronephrosis, hypospadias, clubfoot and craniosynostosis. The children had a median of 2.0 (95%CI1.98,2.02) surgical procedures before age five years with children with oesophageal atresia having the highest median number of procedures (4.5; 95% CI 3.3, 5.8).CONCLUSION: A third of children with congenital anomalies required surgery during infancy and often more than one procedure was needed before age five years. There was no European consensus on the preferred age for surgery for some anomalies.
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- 2023
15. Accuracy of congenital anomaly coding in live birth children recorded in European health care databases, a EUROlinkCAT study
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Bakker, Marian K, Loane, Maria, Garne, Ester, Ballardini, Elisa, Cavero-Carbonell, Clara, García, Laura, Gissler, Mika, Given, Joanne, Heino, Anna, Jamry-Dziurla, Anna, Jordan, Sue, Urhoj, Stine Kjaer, Latos-Bieleńska, Anna, Limb, Elisabeth, Lutke, Renee, Neville, Amanda J, Pierini, Anna, Santoro, Michele, Scanlon, Ieuan, Tan, Joachim, Wellesley, Diana, de Walle, Hermien E K, Morris, Joan K, Bakker, Marian K, Loane, Maria, Garne, Ester, Ballardini, Elisa, Cavero-Carbonell, Clara, García, Laura, Gissler, Mika, Given, Joanne, Heino, Anna, Jamry-Dziurla, Anna, Jordan, Sue, Urhoj, Stine Kjaer, Latos-Bieleńska, Anna, Limb, Elisabeth, Lutke, Renee, Neville, Amanda J, Pierini, Anna, Santoro, Michele, Scanlon, Ieuan, Tan, Joachim, Wellesley, Diana, de Walle, Hermien E K, and Morris, Joan K
- Abstract
Electronic health care databases are increasingly being used to investigate the epidemiology of congenital anomalies (CAs) although there are concerns about their accuracy. The EUROlinkCAT project linked data from eleven EUROCAT registries to electronic hospital databases. The coding of CAs in electronic hospital databases was compared to the (gold standard) codes in the EUROCAT registries. For birth years 2010-2014 all linked live birth CA cases and all children identified in the hospital databases with a CA code were analysed. Registries calculated sensitivity and Positive Predictive Value (PPV) for 17 selected CAs. Pooled estimates for sensitivity and PPV were then calculated for each anomaly using random effects meta-analyses. Most registries linked more than 85% of their cases to hospital data. Gastroschisis, cleft lip with or without cleft palate and Down syndrome were recorded in hospital databases with high accuracy (sensitivity and PPV ≥ 85%). Hypoplastic left heart syndrome, spina bifida, Hirschsprung's disease, omphalocele and cleft palate showed high sensitivity (≥ 85%), but low or heterogeneous PPV, indicating that hospital data was complete but may contain false positives. The remaining anomaly subgroups in our study, showed low or heterogeneous sensitivity and PPV, indicating that the information in the hospital database was incomplete and of variable validity. Electronic health care databases cannot replace CA registries, although they can be used as an additional ascertainment source for CA registries. CA registries are still the most appropriate data source to study the epidemiology of CAs.
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- 2023
16. Timing of Cardiac Surgical Interventions and Postoperative Mortality in Children With Severe Congenital Heart Defects Across Europe:Data From the EUROlinkCAT Study
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Damkjær, Mads, Garne, Ester, Loane, Maria, Urhoj, Stine K, Ballardini, Elisa, Cavero-Carbonell, Clara, Coi, Alessio, García-Villodre, Laura, Given, Joanne, Gissler, Mika, Heino, Anna, Jordan, Sue, Limb, Elizabeth, Neville, Amanda J, Pierini, Anna, Rissmann, Anke, Tan, Joachim, Scanlon, Ieuan, Morris, Joan K, Damkjær, Mads, Garne, Ester, Loane, Maria, Urhoj, Stine K, Ballardini, Elisa, Cavero-Carbonell, Clara, Coi, Alessio, García-Villodre, Laura, Given, Joanne, Gissler, Mika, Heino, Anna, Jordan, Sue, Limb, Elizabeth, Neville, Amanda J, Pierini, Anna, Rissmann, Anke, Tan, Joachim, Scanlon, Ieuan, and Morris, Joan K
- Abstract
BACKGROUND: The purpose of this study was to evaluate the timing of the first cardiac surgery, the number of cardiac surgeries performed, and 30-day postoperative mortality rate for children with severe congenital heart defects (sCHDs) in their first 5 years of life.METHODS AND RESULTS: This was a population-based data linkage cohort study linking information from 9 European congenital anomaly registries to vital statistics and hospital databases. Data were extracted for 5693 children with sCHDs born from 1995 to 2004. Subgroup analyses were performed for specific types of sCHD. Children with sCHDs underwent their first surgical intervention at a median age of 3.6 (95% CI, 2.6-4.5) weeks. The timing of the first surgery for most subtypes of sCHD was consistent across Europe. In the first 5 years of life, children with hypoplastic left heart underwent the most cardiac surgeries, with a median of 4.4 (95% CI, 3.1-5.6). The 30-day postoperative mortality rate in children aged <1 year ranged from 1.1% (95% CI, 0.5%-2.1%) for tetralogy of Fallot to 23% (95% CI, 12%-37%) for Ebstein anomaly. The 30-day postoperative mortality rate was highest for children undergoing surgery in the first month of life. Overall 5-year survival for sCHD was <90% for all sCHDs, except transposition of the great arteries, tetralogy of Fallot, and coarctation of the aorta.CONCLUSIONS: There were no major differences among the 9 regions in the timing, 30-day postoperative mortality rate, and number of operations performed for sCHD. Despite an overall good prognosis for most congenital heart defects, some lesions were still associated with substantial postoperative death.
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- 2023
17. Preterm birth and prescriptions for cardiovascular, antiseizure, antibiotics and antiasthmatic medication in children up to 10 years of age: a population-based data linkage cohort study across six European regions
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Damkjaer, Mads, primary, Loane, Maria, additional, Urhøj, Stine Kjær, additional, Ballardini, Elisa, additional, Cavero- Carbonell, Clara, additional, Coi, Alessio, additional, García-Villodre, Laura, additional, Given, Joanne Emma, additional, Gissler, Mika, additional, Heino, Anna, additional, Jordan, Susan, additional, Neville, Amanda, additional, Pierini, Anna, additional, Tan, Joachim, additional, Scanlon, Ieuan, additional, Garne, Ester, additional, and Morris, Joan K, additional
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- 2022
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18. A national data linkage study to determine the association of congenital anomalies with standardised education outcomes.
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Rawlings, Anna, primary, Scanlon, Ieuan, additional, Glinianaia, Svetlana, additional, Rankin, Judith, additional, Loane, Maria, additional, Morris, Joan, additional, Thayer, Dan, additional, Tucker, David, additional, and Jordan, Sue, additional
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- 2022
- Full Text
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19. Accuracy of congenital anomaly coding in live birth children recorded in European health care databases, a EUROlinkCAT study
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Bakker, Marian, primary, Loane, Maria, additional, Garne, Ester, additional, Ballardini, Elisa, additional, Cavero-Carbonell, Clara, additional, Garcia, Laura, additional, Gissler, Mika, additional, Given, Joanne, additional, Heino, Anna, additional, Jamry-Dziurla, Anna, additional, Jordan, Sue, additional, Urhoj, Stine Kjaer, additional, Latos-Bielenska, Anna, additional, Limb, Elizabeth, additional, Lutke, Renee, additional, Neville, Amanda, additional, Pierini, Anna, additional, Santoro, Michele, additional, Scanlon, Ieuan, additional, Tan, Joachim, additional, Wellesley, Diana, additional, De Walle, Hermien, additional, and Morris, Joan, additional
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- 2022
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20. Prescriptions for insulin and insulin analogues in children with and without major congenital anomalies: A data linkage cohort study across six European regions
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Given, Joanne, primary, Morris, Joan K., additional, Garne, Ester, additional, Ballardini, Elisa, additional, Barrachina-Bonet, Laia, additional, Cavero-Carbonell, Clara, additional, Gissler, Mika, additional, Gorini, Francesca, additional, Heino, Anna, additional, Jordan, Sue, additional, Neville, Amanda J., additional, Pierini, Anna, additional, Scanlon, Ieuan, additional, Tan, Joachim, additional, Urhoj, Stine K., additional, and Loane, Maria, additional
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- 2022
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21. Hospital length of stay among children with and without congenital anomalies across 11 European regions—A population-based data linkage study
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Urhoj, Stine Kjaer, primary, Tan, Joachim, additional, Morris, Joan K., additional, Given, Joanne, additional, Astolfi, Gianni, additional, Baldacci, Silvia, additional, Barisic, Ingeborg, additional, Brigden, Joanna, additional, Cavero-Carbonell, Clara, additional, Evans, Hannah, additional, Gissler, Mika, additional, Heino, Anna, additional, Jordan, Sue, additional, Lutke, Renée, additional, Odak, Ljubica, additional, Puccini, Aurora, additional, Santoro, Michele, additional, Scanlon, Ieuan, additional, de Walle, Hermien E. K., additional, Wellesley, Diana, additional, Zurriaga, Óscar, additional, Loane, Maria, additional, and Garne, Ester, additional
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- 2022
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22. Temporal and geographical variations in survival of children born with congenital anomalies in Europe: A multi‐registry cohort study
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Santoro, Michele, primary, Coi, Alessio, additional, Pierini, Anna, additional, Rankin, Judith, additional, Glinianaia, Svetlana V., additional, Tan, Joachim, additional, Reid, Abigail, additional, Garne, Ester, additional, Loane, Maria, additional, Given, Joanne, additional, Aizpurua, Amaia, additional, Astolfi, Gianni, additional, Barisic, Ingeborg, additional, Cavero‐Carbonell, Clara, additional, de Walle, Hermien E. K., additional, Den Hond, Elly, additional, García‐Villodre, Laura, additional, Gatt, Miriam, additional, Gissler, Mika, additional, Jordan, Sue, additional, Khoshnood, Babak, additional, Kiuru‐Kuhlefelt, Sonja, additional, Klungsøyr, Kari, additional, Lelong, Nathalie, additional, Lutke, Renée, additional, Mokoroa, Olatz, additional, Nelen, Vera, additional, Neville, Amanda J., additional, Odak, Ljubica, additional, Rissmann, Anke, additional, Scanlon, Ieuan, additional, Urhoj, Stine Kjaer, additional, Wellesley, Diana, additional, Wertelecki, Wladimir, additional, Yevtushok, Lyubov, additional, and Morris, Joan K., additional
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- 2022
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23. From Inception to ConcePTION: Genesis of a Network to Support Better Monitoring and Communication of Medication Safety During Pregnancy and Breastfeeding
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Afd Pharmacoepi & Clinical Pharmacology, Pharmacoepidemiology and Clinical Pharmacology, Thurin, Nicolas H, Pajouheshnia, Romin, Roberto, Giuseppe, Dodd, Caitlin, Hyeraci, Giulia, Bartolini, Claudia, Paoletti, Olga, Nordeng, Hedvig, Wallach-Kildemoes, Helle, Ehrenstein, Vera, Dudukina, Elena, MacDonald, Thomas, De Paoli, Giorgia, Loane, Maria, Damase-Michel, Christine, Beau, Anna-Belle, Droz-Perroteau, Cécile, Lassalle, Régis, Bergman, Jorieke, Swart, Karin, Schink, Tania, Cavero-Carbonell, Clara, Barrachina-Bonet, Laia, Gomez-Lumbreras, Ainhoa, Giner-Soriano, Maria, Aragón, María, Neville, Amanda J, Puccini, Aurora, Pierini, Anna, Ientile, Valentina, Trifirò, Gianluca, Rissmann, Anke, Leinonen, Maarit K, Martikainen, Visa, Jordan, Sue, Thayer, Daniel, Scanlon, Ieuan, Georgiou, Mary E, Cunnington, Marianne, Swertz, Morris, Sturkenboom, Miriam, Gini, Rosa, Afd Pharmacoepi & Clinical Pharmacology, Pharmacoepidemiology and Clinical Pharmacology, Thurin, Nicolas H, Pajouheshnia, Romin, Roberto, Giuseppe, Dodd, Caitlin, Hyeraci, Giulia, Bartolini, Claudia, Paoletti, Olga, Nordeng, Hedvig, Wallach-Kildemoes, Helle, Ehrenstein, Vera, Dudukina, Elena, MacDonald, Thomas, De Paoli, Giorgia, Loane, Maria, Damase-Michel, Christine, Beau, Anna-Belle, Droz-Perroteau, Cécile, Lassalle, Régis, Bergman, Jorieke, Swart, Karin, Schink, Tania, Cavero-Carbonell, Clara, Barrachina-Bonet, Laia, Gomez-Lumbreras, Ainhoa, Giner-Soriano, Maria, Aragón, María, Neville, Amanda J, Puccini, Aurora, Pierini, Anna, Ientile, Valentina, Trifirò, Gianluca, Rissmann, Anke, Leinonen, Maarit K, Martikainen, Visa, Jordan, Sue, Thayer, Daniel, Scanlon, Ieuan, Georgiou, Mary E, Cunnington, Marianne, Swertz, Morris, Sturkenboom, Miriam, and Gini, Rosa
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- 2022
24. Preterm birth and prescriptions for cardiovascular, antiseizure, antibiotics and antiasthmatic medication in children up to 10 years of age:a population-based data linkage cohort study across six European regions
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Damkjaer, Mads, Loane, Maria, Urhøj, Stine Kjær, Ballardini, Elisa, Cavero-Carbonell, Clara, Coi, Alessio, García-Villodre, Laura, Given, Joanne Emma, Gissler, Mika, Heino, Anna, Jordan, Susan, Neville, Amanda, Pierini, Anna, Tan, Joachim, Scanlon, Ieuan, Garne, Ester, Morris, Joan K, Damkjaer, Mads, Loane, Maria, Urhøj, Stine Kjær, Ballardini, Elisa, Cavero-Carbonell, Clara, Coi, Alessio, García-Villodre, Laura, Given, Joanne Emma, Gissler, Mika, Heino, Anna, Jordan, Susan, Neville, Amanda, Pierini, Anna, Tan, Joachim, Scanlon, Ieuan, Garne, Ester, and Morris, Joan K
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OBJECTIVES: Preterm children are exposed to many medications in neonatal intensive care units, but little is known about the effect of prematurity on medication use throughout infancy and childhood. We examined prescriptions of cardiovascular medication (CVM), antiseizure medication (ASM), antiasthmatic medication and antibiotics issued/dispensed in the first 10 years of life for very and moderately preterm children compared with term.DESIGN: Population-based data linkage cohort study linking information from birth records to prescription records.SETTING: Six registries from five countries in the EUROlinkCAT study.PARTICIPANTS: The study population included 1 722 912 children, of whom 10 820 (0.6%) were very preterm (<32 weeks gestational age (GA)), 92 814 (5.4%) were moderately preterm (32-36 weeks GA), 1 606 643 (93.3%) were born at term (≥37 weeks GA) and 0.7% had missing GA. Children with major or minor congenital anomalies were excluded (including patent ductus arteriosus).MAIN OUTCOME MEASURES: Relative risk (RR) of receiving a prescription for CVM, ASM, antiasthmatic and antibiotics.RESULTS: Very preterm children had a higher RR of receiving a prescription for CVM and ASM than preterm children. For all preterm children, the RR of having a CVM prescription was 3.58 (95% CI 2.06 to 6.23); 2.06 (95% CI 1.73 to 2.41) for ASM; 1.13 (95% CI 0.99 to 1.29) for antiasthmatics and 0.96 (95% CI 0.93 to 0.99) for antibiotics in the first year of life. Increased prescription of CVM, ASM and antiasthmatics persisted for all 10 years of follow-up. Although the RR was highest for CVM and ASM, in absolute numbers more children received prescriptions for antibiotics (42.34%, 95% CI 38.81% to 45.91%) and antiasthmatics (28.40%, 95% CI 16.07% to 42.649%) than for CVM (0.18%, 95% CI 0.12% to 0.25%) and ASM (0.16%, 95% CI 0.13% to 0.20%) in the first year of life.CONCLUSION: Preterm children had a higher risk of being prescribed/disp
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- 2022
25. Temporal and geographical variations in survival of children born with congenital anomalies in Europe:A multi-registry cohort study
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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, 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, and Morris, Joan K
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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 congenital anomalies (CA) in different European areas.METHODS: In this population-based linkage cohort study, 17 CA registries members of EUROCAT, the European network for the surveillance of CAs, successfully linked data on 115,219 live births with CAs to mortality records. Registries estimated Kaplan-Meier survival at 28 days and 5 years of age and fitted Cox's proportional hazards models comparing mortality at 1 year and 1-9 years of age for children born during 2005-2014 with those born during 1995-2004. The hazard ratios (HR) from each registry were combined centrally using a random-effects model. The 5-year survival conditional on having survived to 28 days of age was calculated.RESULTS: The overall risk of death by 1 year of age for children born with any major CA in 2005-2014 decreased compared to 1995-2004 (HR 0.68, 95% confidence interval [CI] 0.53, 0.89). Survival at 5 years of age ranged between registries from 97.6% to 87.0%. The lowest survival was observed for the registry of OMNI-Net (Ukraine) (87.0%, 95% CI 86.1, 87.9).CONCLUSIONS: Survival of children with CAs improved for births in 2005-2014 compared with 1995-2004. The use of CA registry data linked to mortality data enables investigation of survival of children with CAs. Factors such as defining major CAs, proportion of terminations of pregnancy for foetal anomaly, source of mortality data and linkage methods are important to consider in the design of future studies and in the interpretation of the results on survival of children with CAs.
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- 2022
26. Hospital length of stay among children with and without congenital anomalies across 11 European regions-A population-based data linkage study
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Urhoj, Stine Kjaer, Tan, Joachim, Morris, Joan K, Given, Joanne, Astolfi, Gianni, Baldacci, Silvia, Barisic, Ingeborg, Brigden, Joanna, Cavero-Carbonell, Clara, Evans, Hannah, Gissler, Mika, Heino, Anna, Jordan, Sue, Lutke, Renée, Odak, Ljubica, Puccini, Aurora, Santoro, Michele, Scanlon, Ieuan, de Walle, Hermien E K, Wellesley, Diana, Zurriaga, Óscar, Loane, Maria, Garne, Ester, Urhoj, Stine Kjaer, Tan, Joachim, Morris, Joan K, Given, Joanne, Astolfi, Gianni, Baldacci, Silvia, Barisic, Ingeborg, Brigden, Joanna, Cavero-Carbonell, Clara, Evans, Hannah, Gissler, Mika, Heino, Anna, Jordan, Sue, Lutke, Renée, Odak, Ljubica, Puccini, Aurora, Santoro, Michele, Scanlon, Ieuan, de Walle, Hermien E K, Wellesley, Diana, Zurriaga, Óscar, Loane, Maria, and Garne, Ester
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BACKGROUND: Congenital anomalies are a leading cause of childhood morbidity, but little is known about the long-term outcomes.OBJECTIVE: To quantify the burden of disease in childhood for children with congenital anomalies by assessing the risk of hospitalisation, the number of days spent in hospital and proportion of children with extended stays (≥10 days).METHODS: European population-based record-linkage study in 11 regions in eight countries including children with congenital anomalies (EUROCAT children) and without congenital anomalies (reference children) living in the same regions. The children were born between 1995 and 2014 and were followed to their tenth birthday or 31/12/2015. European meta-analyses of the outcome measures were performed by two age groups, <1 year and 1-4 years.RESULTS: 99,416 EUROCAT children and 2,021,772 reference children were linked to hospital databases. Among EUROCAT children, 85% (95%-CI: 79-90%) were hospitalised in the first year and 56% (95%-CI: 51-61%) at ages 1-4 years, compared to 31% (95%-CI: 26-37%) and 25% (95%-CI: 19-31%) of the reference children. Median length of stay was 2-3 times longer for EUROCAT children in both age groups. The percentages of children with extended stays (≥10 days) in the first year were 24% (95%-CI: 20-29%) for EUROCAT children and 1% (95%-CI: 1-2%) for reference children. The median length of stay varied greatly between congenital anomaly subgroups, with children with gastrointestinal anomalies and congenital heart defects having the longest stays.CONCLUSIONS: Children with congenital anomalies were more frequently hospitalised and median length of stay was longer. The outlook improves after the first year. Parents of children with congenital anomalies should be informed about the increased hospitalisations required for their child's care and the impact on family life and siblings, and they should be adequately supported.
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- 2022
27. Gastrostomy and congenital anomalies:a European population-based study
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Garne, Ester, Tan, Joachim, Loane, Maria, Baldacci, Silvia, Ballardini, Elisa, Brigden, Joanne, Cavero-Carbonell, Clara, Garcia-Villodre, Laura, Gissler, Mika, Given, Joanne, Heino, Anna, Jordan, Sue, Limb, Elizabeth, Neville, Amanda Julie, Rissmann, Anke, Santoro, Michele, Scanlon, Ieuan, Urhoj, Stine Kjaer, Wellesley, Diana G., Morris, Joan, Garne, Ester, Tan, Joachim, Loane, Maria, Baldacci, Silvia, Ballardini, Elisa, Brigden, Joanne, Cavero-Carbonell, Clara, Garcia-Villodre, Laura, Gissler, Mika, Given, Joanne, Heino, Anna, Jordan, Sue, Limb, Elizabeth, Neville, Amanda Julie, Rissmann, Anke, Santoro, Michele, Scanlon, Ieuan, Urhoj, Stine Kjaer, Wellesley, Diana G., and Morris, Joan
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Objective To report and compare the proportion of children with and without congenital anomalies undergoing gastrostomy for tube feeding in their first 5 years. Methods A European, population-based data-linkage cohort study (EUROlinkCAT). Children up to 5 years of age registered in nine EUROCAT registries (national and regional) in six countries and children without congenital anomalies (reference children) living in the same geographical areas were included. Data on hospitalisation and surgical procedures for all children were obtained by electronic linkage to hospital databases. Results The study included 91 504 EUROCAT children and 1 960 272 reference children. Overall, 1200 (1.3%, 95% CI 1.2% to 1.6%) EUROCAT children and 374 (0.016%, 95% CI 0.009% to 0.026%) reference children had a surgical code for gastrostomy within the first 5 years of life. There were geographical variations across Europe with higher rates in Northern Europe compared with Southern Europe. Around one in four children with Cornelia de Lange syndrome and Wolf-Hirschhorn syndrome had a gastrostomy. Among children with structural anomalies, those with oesophageal atresia had the highest proportion of gastrostomy (15.9%). Conclusions This study including almost 2 million reference children in Europe found that only 0.016% of these children had a surgery code for gastrostomy before age 5 years. The children with congenital anomalies were on average 80 times more likely to need a gastrostomy before age 5 years than children without congenital anomalies. More than two-thirds of gastrostomy procedures performed within the first 5 years of life were in children with congenital anomalies.
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- 2022
28. Survival of children with rare structural congenital anomalies:a multi-registry cohort study
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Coi, Alessio, Santoro, Michele, Pierini, Anna, Rankin, Judith, Glinianaia, Svetlana, Tan, Joachim, Reid, Abigail-Kate, Garne, Ester, Loane, Maria, Given, Joanne, Ballardini, Elisa, Cavero-Carbonell, Clara, de Walle, Hermien E. K., Gatt, Miriam, Garcia-Villodre, Laura, Gissler, Mika, Jordan, Sue, Kiuru-Kuhlefelt, Sonja, Urhøj, Stine Kjær, Klungsoyr, Kari, Lelong, Nathalie, Lutke, L. Renee, Neville, Amanda J., Rahshenas, Makan, Scanlon, Ieuan, Wellesley, Diana, Morris, Joan K., Coi, Alessio, Santoro, Michele, Pierini, Anna, Rankin, Judith, Glinianaia, Svetlana, Tan, Joachim, Reid, Abigail-Kate, Garne, Ester, Loane, Maria, Given, Joanne, Ballardini, Elisa, Cavero-Carbonell, Clara, de Walle, Hermien E. K., Gatt, Miriam, Garcia-Villodre, Laura, Gissler, Mika, Jordan, Sue, Kiuru-Kuhlefelt, Sonja, Urhøj, Stine Kjær, Klungsoyr, Kari, Lelong, Nathalie, Lutke, L. Renee, Neville, Amanda J., Rahshenas, Makan, Scanlon, Ieuan, Wellesley, Diana, and Morris, Joan K.
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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 with rare congenital anomalies are costly and sufficiently large standardized cohorts are difficult to obtain due to the rarity of some anomalies. This study aimed to investigate the survival up to 10 years of age of children born with a rare structural congenital anomaly in the period 1995-2014 in Western Europe. Methods Live births from thirteen EUROCAT (European network for the epidemiological surveillance of congenital anomalies) population-based registries were linked to mortality records. Survival for 12,685 live births with one of the 31 investigated rare structural congenital anomalies (CAs) was estimated at 1 week, 4 weeks and 1, 5 and 10 years of age within each registry and combined across Europe using random effects meta-analyses. Differences between registries were evaluated for the eight rare CAs with at least 500 live births. Results Amongst the investigated CAs, arhinencephaly/holoprosencephaly had the lowest survival at all ages (58.1%, 95% Confidence Interval (CI): 44.3-76.2% at 1 week; 47.4%, CI: 36.4-61.6% at 1 year; 35.6%, CI: 22.2-56.9% at 10 years). Overall, children with rare CAs of the digestive system had the highest survival (> 95% at 1 week, > 84% at 10 years). Most deaths occurred within the first four weeks of life, resulting in a 10-year survival conditional on surviving 4 weeks of over 95% for 17 out of 31 rare CAs. A moderate variability in survival between participating registries was observed for the eight selected rare CAs. Conclusions Pooling standardised data across 13 European CA registries and the linkage to mortality data enabled reliable survival estimates to be obtained at five ages up to ten years. Such estimates are useful for clinical practice and parental counselling.
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- 2022
29. Prescription of cardiovascular medication in children with congenital heart defects across six European Regions from 2000 to 2014:data from the EUROlinkCAT population-based cohort study
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Damkjaer, Mads, Urhøj, Stine Kjær, Tan, Joachim, Briggs, Gillian, Loane, Maria, Given, Joanne Emma, Barrachina-Bonet, Laia, Cavero-Carbonell, Clara, Coi, Alessio, Neville, Amanda J, Heino, Anna, Kiuru-Kuhlefelt, Sonja, Jordan, Susan, Scanlon, Ieuan, Pierini, Anna, Puccini, Aurora, Garne, Ester, Morris, Joan K, Damkjaer, Mads, Urhøj, Stine Kjær, Tan, Joachim, Briggs, Gillian, Loane, Maria, Given, Joanne Emma, Barrachina-Bonet, Laia, Cavero-Carbonell, Clara, Coi, Alessio, Neville, Amanda J, Heino, Anna, Kiuru-Kuhlefelt, Sonja, Jordan, Susan, Scanlon, Ieuan, Pierini, Anna, Puccini, Aurora, Garne, Ester, and Morris, Joan K
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OBJECTIVES: Advances in surgical management strategies have substantially reduced fatality from congenital heart defects (CHD). Decreased infant mortality might be expected, consequentially to result in greater morbidity in older children due to complications later in childhood and adolescence. This study aims to evaluate the use of cardiovascular medication (CVM) as an indicator of disease burden in children born with CHD in the first 10 years of life.DESIGN: Population-based cohort study.SETTING: Six population-based registries from the European Surveillance of Congenital Anomalies (EUROCAT) network participated. Data from live born children with major congenital anomalies (CA) born from 2000 to 2014 were linked to prescription databases. Four groups of children were analysed: CA, CHD, severe CHD (sCHD) and ventricular septal defect (VSD) without sCHD. Live born children without CA were included as reference group.PARTICIPANTS: We obtained data on 61 038 children born with a CA, including 19 678 with CHD, 3392 with sCHD, 12 728 children with VSD without sCHD, and 1 725 496 reference children.RESULTS: Children born with sCHD were the most likely to receive a CVM prescription (42.9%, 95% CI, 26.3 to 58.5) in the first year of life compared with 13.3% (6.7 to 22.0) of children with any CHD, 5.9% (3.7 to 8.7) of children with any CA and 0.1% (0.0 to 0.1) of reference children. Medication was less likely to be prescribed after the first year of life for sCHD; 18.8% (14.8 to 23.1) for children 1-4 years and 15.8% (12.0 to 20.1) 5-9 years. Children with sCHD were most likely to receive a diuretic (36.4%, 18.6 to 54.5), an antihypertensive (6.9%, 3.7 to 11.3) or a beta-blocker (5.5%, 2.9 to9.2).CONCLUSION: Almost half of all children with sCHD were prescribed CVM in their first year of life. For all four groups of children with anomalies, the proportion of children with a CVM prescription decreased with age.
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- 2022
30. From Inception to ConcePTION: Genesis of a Network to Support Better Monitoring and Communication of Medication Safety During Pregnancy and Breastfeeding
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Data Science & Biostatistiek, Thurin, Nicolas H, Pajouheshnia, Romin, Roberto, Giuseppe, Dodd, Caitlin, Hyeraci, Giulia, Bartolini, Claudia, Paoletti, Olga, Nordeng, Hedvig, Wallach-Kildemoes, Helle, Ehrenstein, Vera, Dudukina, Elena, MacDonald, Thomas, De Paoli, Giorgia, Loane, Maria, Damase-Michel, Christine, Beau, Anna-Belle, Droz-Perroteau, Cécile, Lassalle, Régis, Bergman, Jorieke, Swart, Karin, Schink, Tania, Cavero-Carbonell, Clara, Barrachina-Bonet, Laia, Gomez-Lumbreras, Ainhoa, Giner-Soriano, Maria, Aragón, María, Neville, Amanda J, Puccini, Aurora, Pierini, Anna, Ientile, Valentina, Trifirò, Gianluca, Rissmann, Anke, Leinonen, Maarit K, Martikainen, Visa, Jordan, Sue, Thayer, Daniel, Scanlon, Ieuan, Georgiou, Mary E, Cunnington, Marianne, Swertz, Morris, Sturkenboom, Miriam, Gini, Rosa, Data Science & Biostatistiek, Thurin, Nicolas H, Pajouheshnia, Romin, Roberto, Giuseppe, Dodd, Caitlin, Hyeraci, Giulia, Bartolini, Claudia, Paoletti, Olga, Nordeng, Hedvig, Wallach-Kildemoes, Helle, Ehrenstein, Vera, Dudukina, Elena, MacDonald, Thomas, De Paoli, Giorgia, Loane, Maria, Damase-Michel, Christine, Beau, Anna-Belle, Droz-Perroteau, Cécile, Lassalle, Régis, Bergman, Jorieke, Swart, Karin, Schink, Tania, Cavero-Carbonell, Clara, Barrachina-Bonet, Laia, Gomez-Lumbreras, Ainhoa, Giner-Soriano, Maria, Aragón, María, Neville, Amanda J, Puccini, Aurora, Pierini, Anna, Ientile, Valentina, Trifirò, Gianluca, Rissmann, Anke, Leinonen, Maarit K, Martikainen, Visa, Jordan, Sue, Thayer, Daniel, Scanlon, Ieuan, Georgiou, Mary E, Cunnington, Marianne, Swertz, Morris, Sturkenboom, Miriam, and Gini, Rosa
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- 2022
31. Prescription of cardiovascular medication in children with congenital heart defects across six European Regions from 2000 to 2014: data from the EUROlinkCAT population-based cohort study
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Damkjaer, Mads, primary, Urhoj, Stine Kjaer, additional, Tan, Joachim, additional, Briggs, Gillian, additional, Loane, Maria, additional, Given, Joanne Emma, additional, Barrachina-Bonet, Laia, additional, Cavero-Carbonell, Clara, additional, Coi, Alessio, additional, Neville, Amanda J, additional, Heino, Anna, additional, Kiuru-Kuhlefelt, Sonja, additional, Jordan, Susan, additional, Scanlon, Ieuan, additional, Pierini, Anna, additional, Puccini, Aurora, additional, Garne, Ester, additional, and Morris, Joan K, additional
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- 2022
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32. From Inception to ConcePTION: Genesis of a Network to Support Better Monitoring and Communication of Medication Safety During Pregnancy and Breastfeeding
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Thurin, Nicolas H, Pajouheshnia, Romin, Roberto, Giuseppe, Dodd, Caitlin, Hyeraci, Giulia, Bartolini, Claudia, Paoletti, Olga, Nordeng, Hedvig, Wallach-Kildemoes, Helle, Ehrenstein, Vera, Dudukina, Elena, MacDonald, Thomas, De Paoli, Giorgia, Loane, Maria, Damase-Michel, Christine, Beau, Anna-Belle, Droz-Perroteau, Cécile, Lassalle, Régis, Bergman, Jorieke, Swart, Karin, Schink, Tania, Cavero-Carbonell, Clara, Barrachina-Bonet, Laia, Gomez-Lumbreras, Ainhoa, Giner-Soriano, Maria, Aragón, María, Neville, Amanda J, Puccini, Aurora, Pierini, Anna, Ientile, Valentina, Trifirò, Gianluca, Rissmann, Anke, Leinonen, Maarit K, Martikainen, Visa, Jordan, Sue, Thayer, Daniel, Scanlon, Ieuan, Georgiou, Mary E, Cunnington, Marianne, Swertz, Morris, Sturkenboom, Miriam, Gini, Rosa, Afd Pharmacoepi & Clinical Pharmacology, Pharmacoepidemiology and Clinical Pharmacology, Afd Pharmacoepi & Clinical Pharmacology, Pharmacoepidemiology and Clinical Pharmacology, Reproductive Origins of Adult Health and Disease (ROAHD), and Groningen Institute for Gastro Intestinal Genetics and Immunology (3GI)
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Risk ,Health Information Exchange ,Knowledge management ,Drug-Related Side Effects and Adverse Reactions ,Computer science ,Population ,Breastfeeding ,Information Storage and Retrieval ,Public health surveillance ,Pregnancy ,Health care ,Humans ,Pharmacology (medical) ,education ,RISK ,ConcePTION project-Building ,Pharmacology ,education.field_of_study ,ConcePTION project-Building, ConcePTION Common Data Model (CDM) ,business.industry ,Communication ,ConcePTION Common Data Model (CDM) ,Europe ,Metadata ,Breast Feeding ,Workflow ,Databases as Topic ,Content analysis ,Analytics ,Drug Information Services ,Female ,business - Abstract
In 2019, the Innovative Medicines Initiative (IMI) funded the ConcePTION project-Building an ecosystem for better monitoring and communicating safety of medicines use in pregnancy and breastfeeding: validated and regulatory endorsed workflows for fast, optimised evidence generation-with the vision that there is a societal obligation to rapidly reduce uncertainty about the safety of medication use in pregnancy and breastfeeding. The present paper introduces the set of concepts used to describe the European data sources involved in the ConcePTION project and illustrates the ConcePTION Common Data Model (CDM), which serves as the keystone of the federated ConcePTION network. Based on data availability and content analysis of 21 European data sources, the ConcePTION CDM has been structured with six tables designed to capture data from routine healthcare, three tables for data from public health surveillance activities, three curated tables for derived data on population (e.g., observation time and mother-child linkage), plus four metadata tables. By its first anniversary, the ConcePTION CDM has enabled 13 data sources to run common scripts to contribute to major European projects, demonstrating its capacity to facilitate effective and transparent deployment of distributed analytics, and its potential to address questions about utilization, effectiveness, and safety of medicines in special populations, including during pregnancy and breastfeeding, and, more broadly, in the general population.
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- 2022
33. COVID-19 infection and medicines in pregnancy – a multinational registry based study Medication use in pregnant women with COVID-19: an interim report
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Hurley, Eimir, Sturkenboom, Miriam, Poblador-Plou, Beatriz, Sanfelix-Gimeno, Gabriel, Sanchez, Francisco, Hurtado, Isabel, Rodriguez, Clara, Jordan, Sue, Thayer, Daniel, Scanlon, Ieuan, Bartolini, Claudia, Limoncella, Giorgio, Gini, Rosa, and Nordeng, Hedvig
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In the current pandemic, pregnant women are becoming infected with the SARS-CoV-2 virus and being treated for COVID-19 disease and its complications. EMA wishes to be prepared for situations where questions arise regarding the impact of medicine used for COVID-19 during pregnancy, on the unborn child. To answer such questions, insight is needed into drug utilisation in COVID-19 affected pregnancies compared with other pregnancies. The regulatory network will be better placed to judge the appropriateness of use in pregnancy, as well as the appropriateness of any proposed pregnancy-related risk minimisation measures, with better insight into how the disease, and treatments currently used, affect the pregnant woman and her infant. The CONSIGN project is funded by the European Medicines Agency (EMA) (specific contract 04 implementing framework contract No EMA//28/PE, Lot 4) to undertake this research. The project has led to the establishment of a new collaboration of over thirty researchers, harnessing data from nine electronic health care registries in eight European countries (Denmark (DK), Germany (DE), France (FR), Italy (IT), Norway (NO), Spain (ES), Sweden (SE), United Kingdom (UK)). Data sources include general practice databases (e.g. UK, ES), claims databases (FR, DE) and record linkage of demographic data, registers and dispensing (SE, NO, DK, IT, ES). This interim report is the first from this new collaboration.  
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- 2021
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34. The Burden of Disease for Children Diagnosed with Turner Syndrome – A European Cohort Study
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Andersen, Ann-Louise Rud, primary, Urhøj, Stine Kjær, additional, Tan, Joachim, additional, Cavero-Carbonell, Clara, additional, Gatt, Miriam, additional, Gissler, Mika, additional, Klungsoyr, Kari, additional, Khoshnood, Babak, additional, Morris, Joan K., additional, Neville, Amanda J., additional, Pierini, Anna, additional, Scanlon, Ieuan, additional, de Walle, Hermien E.K, additional, Wellesley, Diana, additional, Garne, Ester, additional, and Loane, Maria, additional
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- 2022
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35. From Inception to ConcePTION: Genesis of a Network to Support Better Monitoring and Communication of Medication Safety During Pregnancy and Breastfeeding
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Thurin, Nicolas H., primary, Pajouheshnia, Romin, additional, Roberto, Giuseppe, additional, Dodd, Caitlin, additional, Hyeraci, Giulia, additional, Bartolini, Claudia, additional, Paoletti, Olga, additional, Nordeng, Hedvig, additional, Wallach‐Kildemoes, Helle, additional, Ehrenstein, Vera, additional, Dudukina, Elena, additional, MacDonald, Thomas, additional, De Paoli, Giorgia, additional, Loane, Maria, additional, Damase‐Michel, Christine, additional, Beau, Anna‐Belle, additional, Droz‐Perroteau, Cécile, additional, Lassalle, Régis, additional, Bergman, Jorieke, additional, Swart, Karin, additional, Schink, Tania, additional, Cavero‐Carbonell, Clara, additional, Barrachina‐Bonet, Laia, additional, Gomez‐Lumbreras, Ainhoa, additional, Giner‐Soriano, Maria, additional, Aragón, María, additional, Neville, Amanda J., additional, Puccini, Aurora, additional, Pierini, Anna, additional, Ientile, Valentina, additional, Trifirò, Gianluca, additional, Rissmann, Anke, additional, Leinonen, Maarit K., additional, Martikainen, Visa, additional, Jordan, Sue, additional, Thayer, Daniel, additional, Scanlon, Ieuan, additional, Georgiou, Mary E., additional, Cunnington, Marianne, additional, Swertz, Morris, additional, Sturkenboom, Miriam, additional, and Gini, Rosa, additional
- Published
- 2021
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36. COVID-19 infection and medication use in pregnancy (consign)-A multinational drug utilization study using linked healthcare data
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Hurley, Eimir, Poblador-Plou, Beatriz, Gabriel Sanfélix-Gimeno, Sanchez-Saez, Francisco, Hurtado, Isabel, Rodriguez-Bernal, Clara, Jordan, Sue, Thayer, Daniel, Scanlon, Ieuan, Jones, Carys, Bartolini, Claudia C., Gini, Rosa, Limoncella, Giorgio, Sturkenboom, Miriam, and Nordeng, Hedvig
37. Creating a next-generation phenotype library: the health data research UK Phenotype Library.
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Thayer DS, Mumtaz S, Elmessary MA, Scanlon I, Zinnurov A, Coldea AI, Scanlon J, Chapman M, Curcin V, John A, DelPozo-Banos M, Davies H, Karwath A, Gkoutos GV, Fitzpatrick NK, Quint JK, Varma S, Milner C, Oliveira C, Parkinson H, Denaxas S, Hemingway H, and Jefferson E
- Abstract
Objective: To enable reproducible research at scale by creating a platform that enables health data users to find, access, curate, and re-use electronic health record phenotyping algorithms., Materials and Methods: We undertook a structured approach to identifying requirements for a phenotype algorithm platform by engaging with key stakeholders. User experience analysis was used to inform the design, which we implemented as a web application featuring a novel metadata standard for defining phenotyping algorithms, access via Application Programming Interface (API), support for computable data flows, and version control. The application has creation and editing functionality, enabling researchers to submit phenotypes directly., Results: We created and launched the Phenotype Library in October 2021. The platform currently hosts 1049 phenotype definitions defined against 40 health data sources and >200K terms across 16 medical ontologies. We present several case studies demonstrating its utility for supporting and enabling research: the library hosts curated phenotype collections for the BREATHE respiratory health research hub and the Adolescent Mental Health Data Platform, and it is supporting the development of an informatics tool to generate clinical evidence for clinical guideline development groups., Discussion: This platform makes an impact by being open to all health data users and accepting all appropriate content, as well as implementing key features that have not been widely available, including managing structured metadata, access via an API, and support for computable phenotypes., Conclusions: We have created the first openly available, programmatically accessible resource enabling the global health research community to store and manage phenotyping algorithms. Removing barriers to describing, sharing, and computing phenotypes will help unleash the potential benefit of health data for patients and the public., Competing Interests: The authors have no competing interests to declare., (© The Author(s) 2024. Published by Oxford University Press on behalf of the American Medical Informatics Association.)
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- 2024
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38. From Inception to ConcePTION: Genesis of a Network to Support Better Monitoring and Communication of Medication Safety During Pregnancy and Breastfeeding.
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Thurin NH, Pajouheshnia R, Roberto G, Dodd C, Hyeraci G, Bartolini C, Paoletti O, Nordeng H, Wallach-Kildemoes H, Ehrenstein V, Dudukina E, MacDonald T, De Paoli G, Loane M, Damase-Michel C, Beau AB, Droz-Perroteau C, Lassalle R, Bergman J, Swart K, Schink T, Cavero-Carbonell C, Barrachina-Bonet L, Gomez-Lumbreras A, Giner-Soriano M, Aragón M, Neville AJ, Puccini A, Pierini A, Ientile V, Trifirò G, Rissmann A, Leinonen MK, Martikainen V, Jordan S, Thayer D, Scanlon I, Georgiou ME, Cunnington M, Swertz M, Sturkenboom M, and Gini R
- Subjects
- Breast Feeding, Communication, Drug Information Services standards, Europe, Female, Humans, Information Storage and Retrieval, Pregnancy, Databases as Topic organization & administration, Drug-Related Side Effects and Adverse Reactions, Health Information Exchange
- Abstract
In 2019, the Innovative Medicines Initiative (IMI) funded the ConcePTION project-Building an ecosystem for better monitoring and communicating safety of medicines use in pregnancy and breastfeeding: validated and regulatory endorsed workflows for fast, optimised evidence generation-with the vision that there is a societal obligation to rapidly reduce uncertainty about the safety of medication use in pregnancy and breastfeeding. The present paper introduces the set of concepts used to describe the European data sources involved in the ConcePTION project and illustrates the ConcePTION Common Data Model (CDM), which serves as the keystone of the federated ConcePTION network. Based on data availability and content analysis of 21 European data sources, the ConcePTION CDM has been structured with six tables designed to capture data from routine healthcare, three tables for data from public health surveillance activities, three curated tables for derived data on population (e.g., observation time and mother-child linkage), plus four metadata tables. By its first anniversary, the ConcePTION CDM has enabled 13 data sources to run common scripts to contribute to major European projects, demonstrating its capacity to facilitate effective and transparent deployment of distributed analytics, and its potential to address questions about utilization, effectiveness, and safety of medicines in special populations, including during pregnancy and breastfeeding, and, more broadly, in the general population., (© 2021 The Authors. Clinical Pharmacology & Therapeutics published by Wiley Periodicals LLC on behalf of American Society for Clinical Pharmacology and Therapeutics.)
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- 2022
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