England And Wales Binocar-Books Pdf

England and Wales BINOCAR
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Index of Tables 4, Index of Figures 6, Acknowledgements 7. Foreword 9, Executive Summary 10, Glossary 13, Abbreviations 16. Introduction 17, Aim of BINOCAR 18, Objectives of BINOCAR 18. Data collection processing and validation 18, Data confidentiality 19. Comparison of BINOCAR with National Congenital Anomaly Statistics NCAS 19. Chapter 1 Prevalence of congenital anomalies 20, 1 1 Prevalence of congenital anomalies in 2012 20.
1 2 Estimated numbers of cases in England and Wales 25. 1 3 Trends over time 25, Chapter 2 Timing of diagnosis and outcome 30. 2 1 Trends over time in prenatal diagnosis 30, 2 2 Rates of termination of pregnancy with fetal anomaly 31. Chapter 3 The NHS Fetal Anomaly Screening Programme in England 33. Chapter 4 Key public health indicators 35, 4 1 Infant mortality 35. 4 2 Maternal age 35, Chapter 5 Geographical variations and comparison with EUROCAT registers 38. 5 1 Rates of termination of pregnancy with fetal anomaly 42. Chapter 6 Cluster analysis 43, 6 1 Introduction 43.
6 2 Methods 43, 6 3 Results 43, 6 4 Summary 44, Chapter 7 Spotlight on prenatal diagnosis 45. 7 1 Background 45, 7 2 Prenatal diagnosis by congenital anomaly subgroup 45. 7 3 Trends in prenatal diagnosis by congenital anomaly subgroup 45. 7 4 Termination of pregnancy after prenatal diagnosis 47. 7 5 Survival 47, 7 6 Summary 48, Chapter 8 Disease specific registers National Down Syndrome Cytogenetic Register 49. 8 1 Diagnoses of Down Edwards and Patau syndrome 49. 8 2 Regional differences in birth prevalence 51, 8 3 Prenatal diagnosis 53. 8 3 1 Regional differences in prenatal diagnosis 54. Chapter 9 Disease specific registers Cleft lip and palate CRANE database 56. 9 1 Births with cleft lip and or palate 56, 9 2 Trends over time 56.
9 3 Regional differences 58, Appendix A List of current register staff 60. Appendix B List of conditions for exclusion 61, Appendix C BINOCAR Coding Framework 65. Appendix D Geographical reporting of each register in 2012 70. Index of Tables, Chapter 1 Prevalence of congenital anomalies. Table 1 1 Number of cases birth prevalence per 10 000 total births and 95 CIs according to. congenital anomaly subgroup six BINOCAR registers coverage 36 of births in England. and Wales 2012 provisional due to late reporting of cases 22. Table 1 2 Estimated numbers of cases of congenital anomalies in England and Wales 2012 25. Table 1 3 Trends in birth prevalence per 10 000 total births and 95 CIs according to congenital. anomaly subgroup six BINOCAR registers coverage 36 of births in England and Wales 2007 2011. Chapter 2 Timing of diagnosis and outcome, Table 2 1 Timing of first diagnosis and pregnancy outcome for all cases six BINOCAR registers. coverage 36 of births in England and Wales 2012 30. Table 2 2 Number percentage and 95 CIs of prenatally diagnosed cases six BINOCAR registers. coverage 36 of births in England and Wales 2007 2011 31. Table 2 3 Rates of termination of pregnancy per 10 000 total births and 95 CIs according to. major congenital anomaly subgroup six BINOCAR registers coverage 36 of births in. England and Wales 2012 32, Chapter 3 The NHS Fetal Anomaly Screening Programme in England.
Table 3 1 Numbers and percentages of cases prenatally diagnosed for the 11 FASP anomalies four. English BINOCAR registers coverage 28 of births in England 2012 34. Chapter 4 Key public health indicators, Table 4 1 Numbers of infant deaths mortality rates per 10 000 live births and 95 CIs according. to congenital anomaly subgroup six BINOCAR registers coverage 36 of births in. England and Wales 2012 35, Table 4 2 Birth prevalence per 10 000 total births and 95 CIs according to mother s age for each. congenital anomaly subgroup six BINOCAR registers coverage 36 of births in England. and Wales 2012 37, Chapter 5 Geographical variations and comparison with EUROCAT registers. Table 5 1 Birth prevalence per 10 000 total births and 95 CIs by register according to congenital. anomaly subgroup six BINOCAR registers coverage 36 of births in England and Wales. and EUROCAT registers 2012 39, Table 5 2 Rates of termination of pregnancy per 10 000 total births and 95 CIs according to. BINOCAR register for all congenital anomalies six BINOCAR registers coverage 36 of. births in England and Wales 2012 42, Chapter 7 Spotlight on prenatal diagnosis.
Table 7 1 Percentage of isolated cases prenatally diagnosed according to major congenital anomaly. subgroup six BINOCAR registers coverage 36 of births in England 2012 45. Table 7 2 Trends in percentage of isolated cases prenatally diagnosed and 95 CIs according to. congenital anomaly subgroup six BINOCAR registers coverage 36 of births in England. and Wales 2007 2011 46, Table 7 3 Percentage of isolated cases terminated after a prenatal diagnosis according to major. congenital anomaly subgroup six BINOCAR registers coverage 36 of births in England. Table 7 4 One year survival of isolated cases after prenatal and postnatal diagnosis according to. major congenital anomaly subgroup six BINOCAR registers coverage 36 of births in. England 2012 48, Chapter 8 Disease specific registers National Down Syndrome Cytogenetic Register NDSCR. Table 8 1 Down Edwards and Patau syndrome cases diagnosed and notified to NDSCR according to. time of diagnosis and outcome England and Wales 2012 49. Table 8 2 Trends over time per 10 000 total births and 95 CIs in Down syndrome Edwards. syndrome and Patau syndrome England and Wales 2008 2012 50. Table 8 3 Number birth prevalence per 10 000 total births and 95 CIs of Down syndrome. Edwards syndrome and Patau syndrome according to region of maternal residence. England and Wales 2012 52, Table 8 4 Percentage of cases and 95 CIs of Down syndrome Edwards syndrome and Patau. syndrome that were prenatally diagnosed England and Wales 2008 2012 53. Table 8 5 Percentage of cases and 95 CIs of Down syndrome Edwards syndrome and Patau. syndrome that were prenatally diagnosed according to region of maternal residence. England and Wales 2012 54, Chapter 9 Disease specific registers Cleft lip and palate CRANE database. Table 9 1 Number percentage and 95 CIs of children born with a cleft lip and or palate according. to cleft type registered on the CRANE database England Wales and Northern Ireland. Table 9 2 Trend in the number of children reported to be born with a cleft lip and or palate. England Wales and Northern Ireland 2000 2012 57, Table 9 3 Number percentage and 95 CIs of children born with a cleft lip and or palate reported.
to CRANE by the unit providing the cleft treatment England Wales and Northern Ireland. Index of Figures, Chapter 1 Prevalence of congenital anomalies. Figure 1 1 Map of England and Wales showing geographical coverage of the registers included in. this report 20, Chapter 2 Timing of diagnosis and outcome. Figure 2 1 Percentage and 95 CIs of prenatally diagnosed cases six BINOCAR registers coverage. 36 of births in England and Wales 2007 2011 31, Chapter 4 Key public health indicators. Figure 4 1 Birth prevalence and 95 CIs according to maternal age for chromosomal and non. chromosomal anomalies six BINOCAR registers coverage 36 of births in England and. Wales 2012 36, Chapter 5 Geographical variations and comparison with EUROCAT registers. Figures 5 12a d Regional variation in birth prevalence according to major anomaly subgroup six. BINOCAR registers coverage 36 of births in England and Wales 2012 40. Figures 5 12e j Regional variation in birth prevalence according to major anomaly subgroup six. BINOCAR registers coverage 36 of births in England and Wales 2012 41. Chapter 7 Spotlight on prenatal diagnosis, Figure 7 1 Percentage of cases with isolated congenital heart defects prenatally diagnosed and 95.
CI six BINOCAR registers coverage 36 of births in England and Wales 2008 2012 46. Figure 7 2 Percentage of cases with isolated limb anomalies prenatally diagnosed and 95 CI six. BINOCAR registers coverage 36 of births in England and Wales 2008 2012 47. Chapter 8 Disease specific registers National Down Syndrome Cytogenetic Register NDSCR. Figure 8 1 Birth prevalence per 10 000 births and 95 CIs of Down syndrome England and Wales. 2008 2012 50, Figure 8 2 Birth prevalence per 10 000 total births and 95 CIs of Edwards syndrome and Patau. syndrome England and Wales 2008 2012 51, Figure 8 3 Regional differences in the unadjusted birth prevalence for Down syndrome England and. Wales 2012 53, Figure 8 4 Regional differences in the percentages of cases prenatally diagnosed with Down. syndrome England and Wales 2012 55, Chapter 9 Disease specific registers Cleft lip and palate CRANE database. Figure 9 1 Frequency of children reported to be born with a cleft lip and or palate per 10 000 live. births and 95 CIs England Wales and Northern Ireland 2000 2012 58. Acknowledgements, Joan Morris, Professor of Medical Statistics Queen Mary University of London.
Lead Author and Data Analyst, Anna Springett, Research Assistant Queen Mary University of London. Contributors, Judith Budd, Co ordinator EMSYCAR East Midlands South Yorkshire. Elizabeth Draper, Professor of Paediatric and Perinatal Epidemiology EMSYCAR East Midlands South Yorkshire. Jenny Kurinczuk, Professor of Perinatal Epidemiology CAROBB Oxfordshire Berkshire Buckinghamshire. Jibby Medina, Research Fellow CRANE, Judith Rankin.
Professor of Maternal Perinatal Epidemiology NorCAS Northern England. Catherine Rounding, Co ordinator CAROBB Oxfordshire Berkshire Buckinghamshire. David Tucker, Manager CARIS Wales, Diana Wellesley. Consultant in Clinical Genetics WANDA Wessex, Ben Wreyford. Data Manager SWCAR South West England, See Appendix A for a list of all current register staff. Springett A Budd J Draper ES Kurinczuk JJ Medina J Rankin J Rounding C Tucker D Wellesley D. Wreyford B Morris JK Congenital Anomaly Statistics 2012 England and Wales London British Isles. Network of Congenital Anomaly Registers 2014, We thank EUROCAT Central Registry at the University of Ulster for the provision of data supplied to.
them by the BINOCAR registers carrying out data cleaning and the use of their congenital anomaly. subgroup algorithm, The collation of data in this report was commissioned by the Healthcare Quality Improvement. Partnership HQIP until March 2013 and by Public Health England from April 2013. CARIS Wales is funded by Public Health Wales and CRANE cleft lip and palate database is funded. by Specialist Commissioners Until March 2013 CAROBB Oxfordshire Berkshire. Buckinghamshire NDSCR National Down Syndrome Cytogenetic Register and NorCAS Northern. England were funded by the Healthcare Quality Improvement Partnership HQIP EMSYCAR East. Midlands South Yorkshire was funded by the individual Primary Care Trusts PCTs SWCAR South. West England was funded by Specialist Commissioners and WANDA Wessex was funded by the. Wessex Clinical Genetics Service From April 2013 CAROBB EMSYCAR NDSCR NorCAS SWCAR and. WANDA are funded by Public Health England, I am delighted to be able to record my thanks for the 2012 congenital anomaly statistics. report BINOCAR should be congratulated on producing this detailed and comprehensive. report This year sees further progress towards a single national congenital anomaly register for. England building on the expertise of five regions contributing to this year s summary. The report is extremely useful and its careful interpretation allows us to base public health and. health care policy on robust scientific evidence For example the finding that 22 of all infant. deaths are due to congenital anomalies emphasises the importance of developing national. prevention and management policies The comparisons with Europe are also very instructive. It is also clear from this report that antenatal scanning detects some conditions more accurately. than others This knowledge facilitates improved counselling for women and their partners when. taking up the offer of a screening test, Of particular interest to me are the findings relating to the National Down Syndrome Cytogenetic. Register these data allows us to assess national policy They show that the birth prevalence of Down. syndrome is consistent across all regions of England and Wales once differences in maternal age are. taken into account However there are marked geographical differences in the percentage of. babies with Down syndrome being diagnosed before birth This sort of comparative information. allows national and regional screening teams to explore the reasons for these variations. Advances in genomic technologies are leading to rapid developments in screening and diagnosis. The data in this and future reports will illustrate to families and health professionals the impact of. these changes, Dr Anne Mackie, Director of the UK National Screening Committee. Executive Summary, Introduction, This report collates data from six BINOCAR regional congenital anomaly registers which.
together cover 36 of the births in England and Wales to provide an estimate of the birth. prevalence1 of congenital anomalies nationally More detailed information is available from. the website www binocar org, Information from the National Down Syndrome Cytogenetic Register NDSCR for England. and Wales and from the cleft lip and palate CRANE database for England Wales and. Northern Ireland are presented separately, Chapter 1 . 4 Index of Tables Chapter 1 Prevalence of congenital anomalies Table 1 1 Number of cases birth prevalence per 10 000 total births and 95 CIs according to

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