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Question:

From Springfield, Missouri, USA:

I noticed in reading an earlier response to a question submitted about incidence of Type 1, you stated there were no Registries. Would you please explain exactly what a Registry is and what data it would contain?

Answer:

There are many diabetes registries throughout the world. Many simple record the numbers of people with diabetes but others have more or less clinical detail as well. The purpose of the register generally indicates what sort of information is held: e.g., a register for the clinical management of a population in a town or city may hold details about complications, etc. There is a very vigorous debate going on in Europe about patient confidentiality and general agreement that if anyone other than the patient's doctor is holding information about them then they should a) be asked for permission, b) be aware of the detail held and c) have the right to have their details removed.

This is a very simple answer to a complex question.

KJR

Original posting 21 Jul 1998
Posted to Research: Other

  
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Last Updated: Tuesday April 06, 2010 15:08:58
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