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The cumulative incidence of first-time revisions for any reason in the first year of follow-up was 2.83 (2.65–3.01) when the combined registries were used.
Overall, the combined registries are comparable to the rest of the United States population with regard to poverty and education levels, but are slightly more urban and contain a higher proportion of foreign-born individuals.
Age-standardised incidence rates were calculated using the method outlined in CI5 IX Chapter 7 (Boniol and Heanue, 2007), taking into account different person-years at risk for countries whose combined registries spanned different time periods.
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The SIRs for the combined registry data were calculated by combining the observed and expected case counts for each center.
However, combined registry data (e.g. Scandinavian countries) would provide more power for future studies on particular issues.
The ascertainment rate was calculated for the hospital registry (90%), the secondary source (19%), and the combined registry of the primary and secondary sources (92%).
The effect of TOPFA on perinatal mortality and on the stillborn rate were estimated by computing rates that combined registry data with the pertinent hospital information.
The ascertainment rate was calculated for the hospital records (95%), the secondary source (27%), and the combined registry of primary and secondary sources (96%).
The remaining two studies were combined registry and re-evaluation studies, with a total population of 3,170 cases (442 and 2,728 cases).
The manner of death had been re-evaluated in 23 studies (40-3,993 cands), and there were six registry studies (195-17,412 cands) and two combined registry and re-evaluation studies.
EXPeRT has been successful in uniting a number of European national working groups for rare childhood tumors and has published combined registry data for pancreatoblastoma 33, pleuropulmonary blastoma 34, and ovarian Sertoli Leydig cell tumors 35.
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