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?
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.
Original posting 21 Jul 1998
Posted to Research: Other
Last Updated: Tuesday April 06, 2010 15:08:58
This Internet site provides information of a general nature and is designed for educational purposes only. If you have any concerns about your own health or the health of your child, you should always consult with a physician or other health care professional.
This site is published by T-1 Today, Inc. (d/b/a Children with Diabetes), a 501c3 not-for-profit organization, which is responsible for its contents.
© Children with Diabetes, Inc. 1995-2016. Comments and Feedback.