How Valid Are the Rates of Down Syndrome Internationally?: Findings from the International Clearinghouse for Birth Defects Surveillance and Research

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Fältnamn	Indikatorer	Metadata
000		04287naa a2200757 4500
001		oai:DiVA.org:uu-135964
003		SwePub
008		101209s2010 \| \|\|\|\|\|\|\|\|\|\|\|000 \|\|eng\|
024	7	a https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-1359642 URI
024	7	a https://doi.org/10.1002/ajmg.a.334932 DOI
040		a (SwePub)uu
041		a engb eng
042		9 SwePub
072	7	a ref2 swepub-contenttype
072	7	a art2 swepub-publicationtype
100	1	a Leoncini, Emanuele4 aut
245	1 0	a How Valid Are the Rates of Down Syndrome Internationally? :b Findings from the International Clearinghouse for Birth Defects Surveillance and Research
264		c 2010-06-03
264	1	b Wiley,c 2010
338		a print2 rdacarrier
520		a Rates of Down syndrome (DS) show considerable international variation, but a systematic assessment of this variation is lacking. The goal of this study was to develop and test a method to assess the validity of DS rates in surveillance programs, as an indicator of quality of ascertainment. The proposed method compares the observed number of cases with DS (livebirths plus elective pregnancy terminations, adjusted for spontaneous fetal losses that would have occurred if the pregnancy had been allowed to continue) in each single year of maternal age, with the expected number of cases based on the best-published data on rates by year of maternal age. To test this method we used data from birth years 2000 to 2005 from 32 surveillance programs of the International Clearinghouse for Birth Defects Surveillance and Research. We computed the adjusted observed versus expected ratio (aOE) of DS birth prevalence among women 25-44 years old. The aOE ratio was close to unity in 13 programs (the 95% confidence interval included 1), above 1 in 2 programs and below 1 in 18 programs (P < 0.05). These findings suggest that DS rates internationally can be evaluated simply and systematically, and underscores how adjusting for spontaneous fetal loss is crucial and feasible. The aOE ratio can help better interpret and compare the reported rates, measure the degree of under- or over-registration, and promote quality improvement in surveillance programs that will ultimately provide better data for research, service planning, and public health programs.
653		a Down syndrome
653		a epidemiology
653		a prevalence
653		a validity
653		a registries
653		a MEDICINE
653		a MEDICIN
700	1	a Botto, Lorenzo D.4 aut
700	1	a Cocchi, Guido4 aut
700	1	a Annerén, Göranu Uppsala universitet,Institutionen för genetik och patologi4 aut0 (Swepub:uu)goraanne
700	1	a Bower, Carol4 aut
700	1	a Halliday, Jane4 aut
700	1	a Amar, Emmanuelle4 aut
700	1	a Bakker, Marian K.4 aut
700	1	a Bianca, Sebastiano4 aut
700	1	a Canessa Tapia, Maria Aurora4 aut
700	1	a Castilla, Eduardo E.4 aut
700	1	a Csaky-Szunyogh, Melinda4 aut
700	1	a Dastgiri, Saeed4 aut
700	1	a Feldkamp, Marcia L.4 aut
700	1	a Gatt, Miriam4 aut
700	1	a Hirahara, Fumiki4 aut
700	1	a Landau, Danielle4 aut
700	1	a Lowry, R. Brian4 aut
700	1	a Marengo, Lisa4 aut
700	1	a McDonnell, Robert4 aut
700	1	a Mathew, Triphti M.4 aut
700	1	a Morgan, Margery4 aut
700	1	a Mutchinick, Osvaldo M.4 aut
700	1	a Pierini, Anna4 aut
700	1	a Poetzsch, Simone4 aut
700	1	a Ritvanen, Annukka4 aut
700	1	a Scarano, Gioacchino4 aut
700	1	a Siffel, Csaba4 aut
700	1	a Sipek, Antoninu Uppsala universitet,Institutionen för genetik och patologi4 aut
700	1	a Szabova, Elena4 aut
700	1	a Tagliabue, Giovanna4 aut
700	1	a Vollset, Stein Emil4 aut
700	1	a Wertelecki, Wladimir4 aut
700	1	a Zhuchenko, Ludmila4 aut
700	1	a Mastroiacovo, Pierpaolo4 aut
710	2	a Uppsala universitetb Institutionen för genetik och patologi4 org
773	0	t American Journal of Medical Genetics, Part Ad : Wileyg 152A:7, s. 1670-1680q 152A:7<1670-1680x 1552-4825x 1552-4833
856	4 8	u https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-135964
856	4 8	u https://doi.org/10.1002/ajmg.a.33493

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