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Objective: To determine the incidence of neonatal abstinence syndrome (NAS) across neonatal units, explore healthcare utilisation and estimate the direct cost to the NHS., Design: Population cohort study., Setting: NHS neonatal units, using data held in the National Neonatal Research Database., Participants: Infants born between 2012 and 2017, admitted to a neonatal unit in England, receiving a diagnosis of NAS (n=6411)., Main Outcome Measures: Incidence, direct annual cost of care (£, 2016-2017 prices), duration of neonatal unit stay (discharge HR), predicted additional cost of care, and odds of receiving pharmacotherapy., Results: Of 524 334 infants admitted during the study period, 6411 had NAS. The incidence (1.6/1000 live births) increased between 2012 and 2017 (β=0.07, 95% CI (0 to 0.14)) accounting for 12/1000 admissions and 23/1000 cot days nationally. The direct cost of care was £62 646 661 over the study period. Almost half of infants received pharmacotherapy (n=2631; 49%) and their time-to-discharge was significantly longer (median 18.2 vs 5.1 days; adjusted HR (aHR) 0.16, 95% CI (0.15 to 0.17)). Time-to-discharge was longer for formula-fed infants (aHR 0.73 (0.66 to 0.81)) and those discharged to foster care (aHR 0.77 (0.72 to 0.82)). The greatest predictor of additional care costs was receipt of pharmacotherapy (additional mean adjusted cost of £8420 per infant)., Conclusions: This population study highlights the substantial cot usage and economic costs of caring for infants with NAS on neonatal units. A shift in how healthcare systems provide routine care for NAS could benefit infants and families while alleviating the burden on services., Competing Interests: Competing interests: CG holds grants from the National Institute of Health Research, the Mason Medical Research Foundation, the Rosetrees Foundation and the Canadian Institute for Health Research. He receives personal fees from Chiesi Pharmaceuticals. Outside of the submitted work, CG is vice-chair of the NIHR Research for Patient Benefit London Regional Assessment Panel. CG is a non-remunerated member of the Neonatal Data Analysis Unit (NDAU) steering board, which oversees the National Neonatal Research Database (NNRD)., (© Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.)

Objectives: To evaluate the effectiveness of policies and recommendations on folic acid aimed at reducing the occurrence of neural tube defects., Design: Retrospective cohort study of births monitored by birth defect registries., Setting: 13 birth defects registries monitoring rates of neural tube defects from 1988 to 1998 in Norway, Finland, Northern Netherlands, England and Wales, Ireland, France (Paris, Strasbourg, and Central East), Hungary, Italy (Emilia Romagna and Campania), Portugal, and Israel. Cases of neural tube defects were ascertained among liveborn infants, stillbirths, and pregnancy terminations (where legal). Policies and recommendations were ascertained by interview and literature review., Main Outcome Measures: Incidences and trends in rates of neural tube defects before and after 1992 (the year of the first recommendations) and before and after the year of local recommendations (when applicable)., Results: The issuing of recommendations on folic acid was followed by no detectable improvement in the trends of incidence of neural tube defects., Conclusions: Recommendations alone did not seem to influence trends in neural tube defects up to six years after the confirmation of the effectiveness of folic acid in clinical trials. New cases of neural tube defects preventable by folic acid continue to accumulate. A reasonable strategy would be to quickly integrate food fortification with fuller implementation of recommendations on supplements.

Objective: Firstly, to assess the completeness of ascertainment in the National Congenital Anomaly System (NCAS), the basis for congenital anomaly surveillance in England and Wales, and its variation by defect, geographical area, and socioeconomic deprivation. Secondly, to assess the impact of the lack of data on pregnancies terminated because of fetal anomaly., Design: Comparison of the NCAS with four local congenital anomaly registers in England., Setting: Four regions in England covering some 109,000 annual births., Participants: Cases of congenital anomalies registered in the NCAS (live births and stillbirths) and independently registered in the four local registers (live births, stillbirths, fetal losses from 20 weeks' gestation, and pregnancies terminated after prenatal diagnosis of fetal anomaly)., Main Outcome Measure: The ratio of cases identified by the national register to those in local registry files, calculated for different specified anomalies, for whole registry areas, and for hospital catchment areas within registry boundaries., Results: Ascertainment by the NCAS (compared with data from local registers, from which terminations of pregnancy were removed) was 40% (34% for chromosomal anomalies and 42% for non-chromosomal anomalies) and varied markedly by defect, by local register, and by hospital catchment area, but not by area deprivation. When terminations of pregnancy were included in the register data, ascertainment by NCAS was 27% (19% for chromosomal anomalies and 31% for non-chromosomal anomalies), and the geographical variation was of a similar magnitude., Conclusion: The surveillance of congenital anomalies in England is currently inadequate because ascertainment to the national register is low and non-uniform and because no data exist on termination of pregnancy resulting from prenatal diagnosis of fetal anomaly.

Objectives: Analysis of incidence and characteristics of congenital abdominal wall defects, with special reference to the differences between the incidence of gastroschisis and exomphalos (omphalocele)., Design: Retrospective analysis using data from the Office of Population Censuses and Surveys (recoded to differentiate exomphalos and gastroschisis) and the National Congenital Malformation Notification Scheme., Setting: England and Wales, 1987 to 1993., Results: 1043 congenital anterior abdominal wall defects were notified within the seven year study period. Of these, 539 were classified as gastroschisis, 448 as exomphalos, 19 as "prune belly syndrome," and 37 as "unclassified." Gastroschisis doubled in incidence from 0.65 in 1987 to 1.35 per 10,000 total births in 1991, with little further change; the incidence of exomphalos decreased from 1.13 to 0.77 per 10000 births. The overall incidence of notified congenital abdominal wall defects was 2.15 per 10000 total births. Gastroschisis was associated with a lower overall maternal age than exomphalos and with a significantly lower proportion of additional reported congenital malformations (5.0%) than in the cohort with exomphalos (27.4%) (odds ratio 0.14, 95% confidence interval 0.09 to 0.22; P < 0.001). The sex ratio of the two cohorts was the same. The incidence of gastroschisis and exomphalos was higher in the northern regions of England than in the south east of the country., Conclusions: The national congenital malformation notification system showed an increasing trend in the incidence of fetuses born with gastroschisis and a progressive decreasing incidence of exomphalos in England and Wales between 1987 and 1993. Although the reasons for this are likely to be multifactorial, a true differential change seems likely. The observed increase in incidence of gastroschisis relative to exomphalos and the differentiation in maternal age have implications for resource management within the NHS and warrant further epidemiological monitoring. Regional differences may be due to a dietary or environmental factor, which requires further study.

Aims: To describe accurately the total prevalence of neural tube defects (NTDs) in England and Wales over time, and to provide a benchmark up to 1994., Methods: National data about NTDs reported as births or terminations are available from 1974-94, but reporting is incomplete. A local register of NTDs covering Oxfordshire/west Berkshire from 1965-94 was used to validate national data for the locality, using the method of capture and recapture, and hence to estimate incompleteness of reporting nationally., Results: National underreporting is consistent at about two thirds of the true number of cases reaching at least the second trimester. The local register is much more complete, but time trends locally and nationally are similar. In England and Wales total prevalence declined from about 34 per 10000 live and stillbirths in 1974 to a plateau of just under 8 per 10000 in the 1990s., Conclusions: The decline in NTD prevalence is real and seems to have stopped. How this relates to changes in diet or the practice of vitamin supplementation is unknown, and the implications of the plateau are uncertain. OPCS figures of 500 NTDs annually in England and Wales represent about two thirds of the true number of cases.

To conduct a number of studies into the prevalence of neural tube defects (NTD) in the area covered by the Oxford Record Linkage Study (ORLS), multiple sources were used to build a local register of cases occurring in Oxfordshire and West Berkshire between 1968-1990. One source of potential cases--namely, termination and congenital malformation monitoring data available for the locality from the Office of Population Censuses and Surveys (OPCS) data--were kept separate. Comparison of the local cases recorded by OPCS and those known to the register from 1974-1990, using the method of capture-recapture, suggested that national data are only about two thirds complete, but that this underreporting is likely to be reasonably consistent from year to year. OPCS data can therefore be used to study NTD trends if not absolute risks. The local register seemed, by the same yardstick, to be very complete and is being used in a variety of studies of the occurrence of NTD. Survival to one year in this area, over the period 1968-1990, has only improved in the recent past, if at all. Most NTD pregnancies now end in termination rather than birth, and there has been a true decline in the occurrence of NTDs, and likewise the different subtypes.

To examine ethnic differences in postneonatal mortality and the incidence of sudden infant death in England and Wales during 1982-5 records were analysed, the mother's country of birth being used to determine ethnic group. Postneonatal mortality was highest in infants of mothers born in Pakistan (6.4/1000 live births) followed by infants of mothers born in the Caribbean (4.5) and the United Kingdom and Republic of Ireland (4.1). Crude rates were lower in infants of mothers born in India (3.9/1000), east and west Africa (3.0), and Bangladesh (2.8) than in infants of mothers born in the United Kingdom despite less favourable birth weights. Mortality ratios standardised separately for maternal age, parity, and social class were significantly higher in infants of mothers born in Pakistan and lower in those of mothers born in Bangladesh. The ratio for infants of Caribbean mothers was significantly higher when adjusted for maternal age. Ratios for infants of Indian and east African mothers did not show significant differences after standardisation. An important finding was a low incidence of sudden infant death in infants of Asian origin. This was paralleled by lower mortality from respiratory causes. During 1975-85 postneonatal mortality in all immigrant groups except Pakistanis fell to a similar or lower rate than that in the United Kingdom group; Pakistanis showed a persistent excess. During 1984-5 several immigrant groups (from the Republic of Ireland, India, west Africa, and the Caribbean) recorded an increase in postneonatal mortality. Surveillance of postneonatal mortality among ethnic communities should be continued, and research is needed to identify the causes underlying the differences.