Estimates of the live births, natural losses, and elective terminations with Down syndrome in the United States

American Journal of Medical Genetics, Part A - Tập 167 Số 4 - Trang 756-767 - 2015
Gert de Graaf1, F. Buckley2,3, Brian G. Skotko4
1Dutch Down Syndrome Foundation, Meppel, The Netherlands
2Down Syndrome Education International, Kirkby Lonsdale, Cumbria, UK
3Down Syndrome Education USA, Newport Beach, California
4Department of Pediatrics, Division of Medical Genetics, Massachusetts General Hospital and Harvard Medical School, Boston, Massachusetts

Tóm tắt

The present and future live birth prevalence of Down syndrome (DS) is of practical importance for planning services and prioritizing research to support people living with the condition. Live birth prevalence is influenced by changes in prenatal screening technologies and policies. To predict the future impact of these changes, a model for estimating the live births of people with DS is required. In this study, we combine diverse and robust datasets with validated estimation techniques to describe the non‐selective and live birth prevalence of DS in the United States from 1900–2010. Additionally, for the period 1974–2010, we estimate the impact of DS‐related elective pregnancy terminations (following a prenatal diagnosis of DS) on the live births with DS. The live birth prevalence for DS in the most recent years (2006–2010) was estimated at 12.6 per 10,000 (95% CI 12.4–12.8), with around 5,300 births annually. During this period, an estimated 3,100 DS‐related elective pregnancy terminations were performed in the U.S. annually. As of 2007, the estimated rates at which live births with DS were reduced as a consequence of DS‐related elective pregnancy terminations were 30% (95% CI: 27.3–31.9) for the U.S. as a whole. Our results and our model provide data on the impact of elective pregnancy terminations on live births with DS and may provide a baseline from which future trends for live births with DS can be estimated. © 2015 Wiley Periodicals, Inc.

Từ khóa


Tài liệu tham khảo

Arizona Birth Defects Monitoring Program Facts about Down syndrome 1995–2007. Available athttp://www.azdhs.gov/phs/phstats/bdr/reports/AZ‐Down‐Sydrome‐Facts_1995‐2007.pdf. Accessed on November 1 2013.

10.1097/AOG.0b013e31824fb482

10.1093/eurpub/ckl103

10.1177/003335491112600209

10.1002/(SICI)1097-0223(199801)18:1<9::AID-PD210>3.0.CO;2-F

10.1002/bdra.20294

Centers for Disease Control and Prevention.1999. Achievements in public health 1900–1999: Family planning centers for Disease Control and Prevention. 1073 p.

10.1016/j.jpeds.2007.07.045

10.1111/j.1468-3148.2010.00593.x

10.1111/j.1365-2788.2011.01398.x

10.1016/S0398-7620(05)84771-6

EganJ BennP TurnerG SpencerJ SmithK CampbellW.2008. An update on trends in Down syndrome livebirths in the U. S. from 1989 to 2005. S168 p.

10.1038/469289a

Fertility and mortality in the United States. Available athttp://eh.net/encyclopedia/article/haines.demography. Accessed on September 28 2013.

10.1038/35066065

10.1002/(SICI)1096-8628(19960424)62:4<376::AID-AJMG10>3.0.CO;2-L

International Clearinghouse Centre for Birth Defects.2010. Annual reports. Available athttp://www.icbdsr.org/page.asp?p=10065&l=1. Accessed on September 28 2013.

10.1002/ajmg.a.36247

10.2105/AJPH.87.2.301

10.1002/bdra.23198

10.1002/(SICI)1097-0223(199909)19:9<808::AID-PD637>3.0.CO;2-B

McDermott H, 2011, Is the prevalence of Down syndrome births in Hawaii increasing?, Hawaii Med J, 70, 72

10.1136/bmj.b3794

10.1136/jms.9.1.2

10.1002/pd.568

10.1002/(SICI)1097-0223(199902)19:2<142::AID-PD486>3.0.CO;2-7

National Birth Defects Prevention Network.2007. Population‐based Birth Defects Surveillance Data from Selected States 2000–2004. Birth Defects Research (Part A) 79:874–942 (2007). Available athttp://www.nbdpn.org/annual_reports.php

National Birth Defects Prevention Network.2008. Population‐based Birth Defects Surveillance Data from Selected States 2001–2005. Birth Defects Research (Part A) 82:831–903 (2008). Available athttp://www.nbdpn.org/annual_reports.php

National Birth Defects Prevention Network.2009. Population‐based Birth Defects Surveillance Data from Selected States 2002–2006. Birth Defects Research (Part A) 85:939–1004 (2009). Available athttp://www.nbdpn.org/annual_reports.php

National Birth Defects Prevention Network.2010. Selected Birth Defects Data from Population‐based Birth Defects Surveillance Programs in the United States 2003–2007. Birth Defects Research (Part A) 88:1062–1174 (2010). Available athttp://www.nbdpn.org/annual_reports.php

National Birth Defects Prevention Network.2011. Selected Birth Defects Data from Population‐based Birth Defects Surveillance Programs in the United States 2004–2008. Birth Defects Research (Part A) 91:1028[1]1149 (2011). Available athttp://www.nbdpn.org/annual_reports.php

National Birth Defects Prevention Network.2012. Major Birth Defects Data from Population‐based Birth Defects Surveillance Programs in the United States 2005–2009. Birth Defects Research (Part A) 94:S1–S169 (2012). Available athttp://www.nbdpn.org/annual_reports.php

National Birth Defects Prevention Network.2014. Guidelines for conducting birth defects Surveillance National birth defects prevention network. Available athttp://www.nbdpn.org/birth_defects_surveillance_gui.php. Accessed on May 24 2014.

National Institute of Child Health and Human Development Task Force on Predictors of Hereditary Disease or Congenital Defects. Antenatal diagnosis amniocentesis: NIH consensus development conferences. Clin Pediatr (Phila). 18: 454–462.

10.1016/j.ajog.2012.05.021

10.1038/gim.2011.73

10.5858/arpa.2012-0319-CP

10.1002/bdra.20735

10.1016/j.jpeds.2013.06.013

10.1002/pd.1443

10.1542/peds.2009-0745

10.1136/adc.2009.166017

10.1002/uog.4775

U.S. Census Bureau 2003. Statistical abstract of the United States: 2003. Available athttp://www.census.gov/prod/www/statistical_abstract.html. Accessed on September 28 2013.

10.2105/AJPH.86.5.731

Wetzel JR, 1990, American families: 75 years of change, Mon Labor Rev, 113, 4

10.1002/pd.3993

Thông tin
Thông tin xuất bản

American Journal of Medical Genetics, Part A

Tập 167 Số 4

756-767

Thông tin tác giả