Section 4A - Study Objectives/Background and Significance (Phase 3 - 11/2010)
Section 4A - Page 4
Registry
Study
centralized source for validation of case status (such as pathology laboratory reports
for cancer). In the U.S., increasing concerns about privacy and confidentiality have
led individual hospitals or providers to refuse to participate in registries. It is critical
in the estimation of incidence rates and temporal tends in rates that case
ascertainment be virtually complete, and if incomplete, that the degree of
ascertainment be consistent over time. The relatively low frequency of diabetes
occurrence requires longer time periods and larger populations for stable rate and
trend estimates. There is also reluctance on the part of older youth and young adults
to participate in registration activities. Many of the limitations in developing
registries of diabetes in youth in the U.S. are inherent in the underlying health care
system (lack of common health identification system, multiple and fragmented care
sites, privacy concerns, data systems designed to address only billing) and are not due
to the registries themselves. As demonstrated by the SEARCH for Diabetes in Youth
registry, the majority of such limitations can be successfully addressed, resulting in
unbiased estimates of rates and disease-risk factor associations.
4.2.2.
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