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Rob van Hest Capture-recapture Methods in Surveillance - RePub ...

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Chapter 3<br />

3.1 Application of capture-<strong>recapture</strong> analysis <strong>in</strong> studies on<br />

human diseases<br />

An overview of the applications of capture-<strong>recapture</strong> methods <strong>in</strong> human diseases before<br />

1997 is given elsewhere. 1,2 Apart from <strong>in</strong>jury-related capture-<strong>recapture</strong> studies, these<br />

reports were categorised <strong>in</strong>to four different disease groups, often diseases with a chronic<br />

character. Apparently the characteristics of most of these diseases, their patients and their<br />

registers fulfil criteria for feasibility as well as for agreement with the assumptions<br />

underly<strong>in</strong>g capture-<strong>recapture</strong> analysis best. In a first group more than 30 capture<strong>recapture</strong><br />

studies were performed for monitor<strong>in</strong>g the <strong>in</strong>cidence of <strong>in</strong>sul<strong>in</strong>-dependent<br />

diabetes mellitus and <strong>in</strong> this field capture-<strong>recapture</strong> analysis has become a standard<br />

method to correct case-ascerta<strong>in</strong>ment. A second group consists of capture-<strong>recapture</strong><br />

studies on the frequency of birth defects, such as congenital rubella, cleft lip and cleft<br />

palate, sp<strong>in</strong>a bifida, Down’s syndrome and other congenital anomalies. A third group of<br />

capture-<strong>recapture</strong> studies focussed on cancer, e.g. to estimate the completeness of cancer<br />

registries or to estimate breast cancer screen<strong>in</strong>g sensitivity. Apart from these three disease<br />

categories, capture-<strong>recapture</strong> methods were used to estimate the <strong>in</strong>cidence or prevalence<br />

of various diseases such as haemophilia, myocardial <strong>in</strong>farctions, Hunt<strong>in</strong>gton’s disease,<br />

mental disease, Rett’s syndrome, and vacc<strong>in</strong>e-associated poliomyelitis. A brief discussion<br />

of these early capture-<strong>recapture</strong> studies published before 1997 can be found at the<br />

website http://www.pitt.edu/~yuc2/iddm.html, http://www.pitt.edu/~yuc2/birth.html,<br />

http://www.pitt.edu/~yuc2/cancer.html and http://www.pitt.edu/~yuc2/other.html for<br />

diabetes, birth defects, cancer and other diseases respectively (accessed 1 May 2007).<br />

After 1997 more than 100 capture-<strong>recapture</strong> studies on human diseases other<br />

than <strong>in</strong>fectious diseases or tuberculosis have been published <strong>in</strong> peer-reviewed journals.<br />

Most of the diseases studied are aga<strong>in</strong> chronic conditions and largely follow the same<br />

categories as described above. Approximately half the studies are related to diabetes<br />

mellitus. Birth defects such as neural tube defects, Down’s syndrome, congenital ocular<br />

anomalies, tuberous sclerosis, bra<strong>in</strong> arteriovenous malformations, heart malformations<br />

and other congenital disorders were studied and several reports were related to estimat<strong>in</strong>g<br />

cancer <strong>in</strong>cidence or completeness of cancer registries. New groups of diseases are<br />

neurological diseases with a number of studies report<strong>in</strong>g on Park<strong>in</strong>son’s disease, multiple<br />

sclerosis, epilepsy, amyotrophic lateral sclerosis, myasthenia gravis, hemiplegic migra<strong>in</strong>e<br />

and stroke, and rheumatological disorders, such as rheumatoid arthritis, systemic sclerosis,<br />

polyarteritis nodosa, dermatomyositis and systemic lupus erythematodes.<br />

Apparently the characteristics of most of these chronic diseases, their patients<br />

and their registers fulfil criteria for feasibility as well as for agreement with the<br />

assumptions underly<strong>in</strong>g capture-<strong>recapture</strong> analysis best. Perhaps with the exemption of<br />

some neurological and rheumatological conditions, the case-def<strong>in</strong>ition is likely<br />

unambiguous and uniform over the various registers. Arguably, for these categories of<br />

diseases sufficient registers are available and possible relationships between these<br />

registers, e.g. cl<strong>in</strong>ical registers, laboratory registers, health <strong>in</strong>surance registers or patient<br />

support and advocacy group registers, violat<strong>in</strong>g the <strong>in</strong>dependence assumption, are limited<br />

and perhaps avoidable by source selection. The permanent character of most of these<br />

conditions may reduce violation of the closed population assumption.<br />

38

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