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Confirmation can be obtained, in the case of deceased subjects, by consulting the Scottish or Northern Irish cancer registries (good data are available from mid-1960s onwards).
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The stigma of the sex-offender label is difficult to shed: "Once you're on the registry, good luck trying to explain it," says Sarah Tofte, who has studied sex-offender laws for the nonprofit group Human Rights Watch.
There are good and bad national registries, just as there are good and bad open registries.
PHENOTYPE makes use of 16 existing cohorts and registries with good health outcome data in Spain, the Netherlands, Lithuania and UK (see online table 1), linking these to newly created natural environment indicators.
And if you've signed up once, you're on the registry for good.
Also, validation of a sample showed that the quality of the registry is good.
The Joint Asia Diabetes Evaluation JADEequationsons have been formulated and tested on local data from the Hong Kong Diabetes Registry showing good validity and discriminating power.
The validity of data including the date of RRT start in and completeness of the Danish Nephrology Registry is good [ 32].
The multiregion French Language Peritoneal Dialysis Registry had good availability of outcomes as well as treatment data with most centers in France but also from other French speaking countries in Europe and North Africa.
Even in Schleswig Holstein, covered by a cancer registry of good quality, a study between 2000 and 2008 showed that 69.5% of melanoma cases have an unknown Union for International Cancer Control UICCC) stage.
This algorithm, developed by using Medicare data linked to an arthritis registry, had good performance characteristics: sensitivity of 94%95%95 % confidence interval (CI) 80% 999 %), specificity of 100%% (95 % CI 99 %–100 %), and positive predictive value of 97 % (95 % CI 84 %–100 %) [ 20].
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Justyna Jupowicz-Kozak
CEO of Professional Science Editing for Scientists @ prosciediting.com