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MaryO

NIH Cushing's Syndrome Survey

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Information about this survey and your consent to participate

Patients with Cushing's syndrome report decreased quality of life before and after surgical treatment. We are investigators at the U.S. National Institutes of Health who care for patients with Cushing's syndrome. We want to learn more about the patients' experience during the post-surgical recovery phase with particular reference to quality of life. We are inviting patients like you who have had surgical treatment to complete the survey. Your responses will be gathered anonymously and will be treated confidentially; we hope to use them in a publication so that other physicians can learn about these issues.

 

Please kindly complete the following online questionnaire which is comprised of approximately 27 questions and should take around 15 minutes.

 

Take the survey here: http://csrecoverypatient.nichd.nih.gov/cssurvey/patientaccept.html

 

 

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I can't participate because I haven't had successful treatment yet, but I'm looking forward to seeing the results when they're published. Thanks for posting this.

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I don't think you have to have had successful treatment yet, any treatment will do, since they have a lot of options for how many surgeries, how you're doing post-op and a big place for your own comments.

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I don't think you have to have had successful treatment yet, any treatment will do, since they have a lot of options for how many surgeries, how you're doing post-op and a big place for your own comments.

 

Thanks for pointing that out, I'll go complete it. :)

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Done!

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I tired completeing it, but It keeps kicking me back to the beginning of the survey when I complete question number 27. Do other folks get a "completed" page or the same thing?

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Mine completed without any problems FWIW, I'm using Firefox, not that it should matter.

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I'm so glad to see a survey like this. I had a lot of things to say in the "comments" section--the only thing was I forgot to mention how long it took me to get diagnosed.

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