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Re: Re: Re: Re: Questionnaire
Submitted by susie on 06/Jan/2009 in reply to Re: Re: Re: Questionnaire posted by jodi on 04/Jan/2009
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Ben and I are considering how to post the questionaire on our site once it's finished. We would like to arrange it so that it could be downloaded. It should not be filled out on line. I am concerned about confidentiality issues. Maybe, they could be mailed to our foundation. I have our attorney pondering the legal issues-- One idea I had was to assign patient numbers to the questionaire. We also need people to sign a release so that this info can be shared with appropriate medical researchers ( with or without their names). This should not be so complex but welcome to today's world. I will keep everyone posted but in the meantime, let's come up with more questions and refine if necessary those we currently have. This is a wonderful idea and we will make it happen!!!! Susie
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