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ds21
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Joined: Dec 23 2011
Location: Michigan
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Topic: Breast Cancer Survery to Improve Treatment Options Posted: Feb 29 2012 at 10:33am |
Even gathering patient information in a survey requires Institutional Review Board (IRB) approval. If this is a bona fide research project, you need to identify the name of the institution conducting the research, contact information for the team managing the project and a statement about patient privacy and how the data will be used. If the project is funded by NIH or some other source, you really ought to list the sponsors as well. Sorry, but these days there is no such thing as a anonymous internet transaction. Given the information provided, there is no way for a prospective participant to know if you are a legitimate researcher or a scam artist trying to steal confidential medical information.
David
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123Donna
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Location: St. Louis, MO
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Posted: Feb 24 2012 at 1:36pm |
Judy,
Thanks for the warning.
Donna
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Grateful for today
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Posted: Feb 24 2012 at 12:42pm |
Hi,
Just a FYI for all.
When I saw this, was not sure what the survey would ask.
Since usually, the last screen has something like (Send) or (Finish) etc, I started the survey
with random info........BUT.......did not realize that after you answered questions, it looked like
the survey was sent.
Maybe I am the only one that did not know how the surveymonkey worked.
Survey questions mostly regarding knowledge of breast cancer and treatment options.
Also now realizing there should have been something about agreement to participate in a survey
if it was coming from an academic institution. In retrospect, it would seem an academic
institution would identify itself.
Since I am usually very careful on the computer, was more than surprised that the survey was
sent without a last page with option to send or not or being unable to get out of the survey.
Others may have no concern with this survey.
Just wanted to share my above thoughts.
Grateful for today...........judy
To bcancerresearch:
Is there anyway to recall the info I just entered in your survey as it was not accurate?
Edited by Grateful for today - Feb 24 2012 at 12:49pm
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bcancerresearch
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Posted: Feb 24 2012 at 12:04pm |
Hey Everyone!!! Please help improve the quality of care in breast cancer patients by participating in our short survey. The purpose is to gather non identifiable information to determine the choices breast cancer patients make. I work for an academic institution in Boston trying to evaluate the way we currently diagnose and treat breast cancer. Here is a link to the survey: https://www.surveymonkey.com/s/JLZVXKH
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