Major congenital anomalies in babies born with Down syndrome: a EUROCAT population-based registry study.

Previous studies have shown that over 40% of babies with Down syndrome have a major cardiac anomaly and are more likely to have other major congenital anomalies. Since 2000, many countries in Europe have introduced national antenatal screening programs for Down syndrome. This study aimed to determine if the introduction of these screening programs and the subsequent termination of prenatally detected pregnancies were associated with any decline in the prevalence of additional anomalies in babies born with Down syndrome. The study sample consisted of 7,044 live births and fetal deaths with Down syndrome registered in 28 European population-based congenital anomaly registries covering seven million births during 2000-2010. Overall, 43.6% (95% CI: 42.4-44.7%) of births with Down syndrome had a cardiac anomaly and 15.0% (14.2-15.8%) had a non-cardiac anomaly. Female babies with Down syndrome were significantly more likely to have a cardiac anomaly compared to male babies (47.6% compared with 40.4%, P < 0.001) and significantly less likely to have a non-cardiac anomaly (12.9% compared with 16.7%, P < 0.001). The prevalence of cardiac and non-cardiac congenital anomalies in babies with Down syndrome has remained constant, suggesting that population screening for Down syndrome and subsequent terminations has not influenced the prevalence of specific congenital anomalies in these babies.

Descriptive survey of non-commercial randomised controlled trials in the United Kingdom, 1980-2002.

OBJECTIVES: To describe the characteristics of randomised controlled trials supported by the main non-commercial sources of funding in the United Kingdom between 1980 and 2002. DESIGN: Descriptive survey. SETTING: Randomised controlled trials funded by the Medical Research Council, NHS research and development programme, Department of Health, Chief Scientist Office in Scotland, and medical research charities. PARTICIPANTS: 1464 randomised controlled trials supported by the main non-commercial sources of funding. RESULTS: Support for randomised controlled trials by the main sources of non-commercial funding in the United Kingdom has fallen in recent years, without any concomitant increase in the sample sizes of these studies. Drug trials in a limited range of health problems have dominated among the studies supported by the Medical Research Council and medical research charities. Until recently, the NHS research and development programme supported randomised controlled trials of various healthcare interventions, in a wide range of health problems, but between 1999 and 2002 many of the subprogrammes that had commissioned trials were discontinued. CONCLUSIONS: The future of non-commercial randomised controlled trials in the United Kingdom has been threatened by the discontinuation or demise of national and regional NHS research and development programmes. Support also seems to be declining from the Medical Research Council and the medical research charities. It is unclear what the future holds for randomised controlled trials that address issues of no interest to industry but are of great importance to patients and practitioners.