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For information other than the basic tissue types, doctors have to write, phone or send faxes or e-mail to the individual registries, Dr. Confer said.
Haplotype frequency estimations are an important tool for small registries as well, to help optimize donor match predictions and the size of individual registries.
Methods of follow-up vary according to the individual registries.
The validity of the individual registries mentioned above has also been studied.
The individual registries are geographically located to oversample minority populations, including African-Americans, Hispanics, Asian Pacific Islanders, and Native Americans.
However, the extra work to compute the expected incidences can be performed once centrally and need not be a burden on individual registries.
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Through individual registry linkages we observed how women were treated in the regular medical care.
Only Boston Public Health Commission registry managers had access to individual registry records; registry data provided to Boston University investigators were either aggregated or de-identified.
The database did not contain any person-identifier or other information that could be used to identify individual registry patients.
No electronic patient identifier was used, and there was no information that could be used to identify individual registry patients by personalised analysis of the data.
Once authorization for data access has been granted by the Danish Data Protection Agency, data can be obtained after approval and release by the individual registry administrators.
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