Representativeness of a roster of volunteer North American twins with chronic disease

Authors: Mack, Thomas M.1; Deapen, Dennis1; Hamilton, Ann S.1

Source: Twin Research, Volume 3, Number 1, 1 March 2000 , pp. 33-42(10)

Publisher: Australian Academic Press

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Abstract:

To identify large numbers of twins affected by chronic disease as potentialsubjects for studies of environmental and genetic chronic disease determinants,we advertised for affected twins over the period 1980-91 in newspapersacross North America. Responses were received from 17 245 twin pairs in whichcases of cancer or other chronic disease had occurred. To assess therepresentativeness of affected twins identified by advertising, we evaluatedthe pattern of reporting, compared the cases identified to the number of casesestimated to be prevalent among all North American twins, compared the cases topopulation-based singleton case series, compared the healthy co-twins to population-based samples of healthy persons, assessed the impacton ascertainment of opinions about disease causation, compared the pattern ofprospective to retrospective ascertainment of disease in the originallyunaffected co-twins of cases, and compared the results of the prospectiveascertainment of disease in co-twins to comparable published estimates.Youth, gender, zygosity, education, and disease concordance were found to beoverall determinants of ascertainment. Disease-discordant DZ twinsappeared to be modestly underascertained. While somewhat better educated, both concordant and discordant pairs were judged to be reasonably representativeof affected non-Hispanic white North American twin pairs of comparablestatus, ie of comparable age, sex, race, and zygosity. If interpreted withcaution, the concordance patterns of such twins can be used to generate genetichypotheses, but should not be the basis of definitive heritability analyses. Weconclude that advertising offers a method of identifying pairs of twins thatcan serve as subjects for studies designed to identify disease determinants.

Keywords: cancer; breast cancer; epidemiology; multiple sclerosis; concordance; familiality

Document Type: Research article

DOI: 10.1375/136905200320565670

Affiliations: 1: Department of Preventive Medicine, University of Southern California School of Medicine, Los Angeles, California, USA

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