ࡱ> -  "bjbj66 TvShTvSh9x x     8Vd?&~777b?d?d?d?d?d?d?$ BDR? 7"777?  k?7^  b?7b?69;00j9N??0?9EE8;E ;7777777??R777?7777E777777777x X :  Number / Street Name Suburb State / Postcode Date Re: We would like to use your childs information for a Dear , We would like to use information for the . Our files indicate that your childs medical records may provide useful data for this . . The aim of the registry is to . The registry is run by . Or . It is run by . We will use your childs information for this unless you tell us not to. The rest of this letter gives you more information about the . It also tells you how you can opt out of the if you want to. What information will we give the ? We would like to give the your childs: . We will get your childs information from: , such as XXX>. Why does the need this information? The aim of the is to find out more information about . We hope that it will help answer questions such as: ? what treatments work best for people with ? what are the long-term outcomes for people with ? how can health services provide better care for people with ?> The will use this information to . Who will have access to your childs information? The following people and organisations also called third parties will have access to the : >. How will the store your childs information? Your childs information will be stored on at in . Or What are the risks? The main risk to your child is a potential breach of privacy. However, as we have explained, we will protect your childs privacy by . Ethics The has been approved by . What happens next? a. If you agree to share your childs information If you are happy for us to share your childs information you do not have to do anything. We will simply give your childs information to the . The will store your childs information for . at any time. Or You will not be able to remove your childs information from . b. If you do not agree to share your childs information If you do not want us to share your childs information with the , please contact us within four weeks of the date of this letter. That is, the . You can get in touch with us several ways: Post Fill out the opt out form attached to this letter and return it to us in the enclosed self-addressed, reply-paid envelope. Email Send an email at . Phone Call on . Do you have any questions? Please get in touch if you have any questions about this letter. You can contact on . You can also email them on . Thank you very much for your time. Kind regards Name Department The Royal Childrens Hospital Opt Out Form HREC project number:Name of : I do not consent for you to pass on my childs information to the . Childs Name Parent/Guardian NameParent/Guardian SignatureDate You can contact the Director of Research Operations at The Royal Childrens Hospital if you: have any concerns or complaints about the project are worried about your rights as a research participant would like to speak to someone independent of the project. You can phone the Director on (03) 9345 5044 or email them at  HYPERLINK "mailto:rch.ethics@rch.org.au" rch.ethics@rch.org.au.      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