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Drugs and Drug Treatments ATG, Cyclosporine, Revlimid, Vidaza, Dacogen, ...

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  #1  
Old Fri Mar 27, 2015, 10:32 AM
C3TRIS C3TRIS is offline
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Question New PNH Drug Survey - Patient Preferences

Hello,

I'm a member from a team at the University of Pennsylvania working to help develop a new PNH drug for the market. To aid in its development we would love to hear the patient perspective on issues such as efficacy of current treatments, preference on modes of administration etc.

Here is a link to a survey: https://wharton.qualtrics.com/SE/?SI...l9bFijeuqryWDb

We look forward to hearing your responses!

Last edited by C3TRIS : Fri Mar 27, 2015 at 10:32 PM.
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Old Fri Mar 27, 2015, 01:23 PM
mharrell mharrell is offline
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You'll probably get more response if you post the survey on the PNH support site, pnhdisease.org.

I don't have PNH, my son was diagnosed with it, but I can tell you that he wouldn't know how to answer the question "Are you currently being treated for PNH?" because what do you mean by "treated"? Does that only refer to being on Soliris (my son doesn't need it)? Does it mean being monitored with blood tests? It's too vague.
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Old Fri Mar 27, 2015, 10:32 PM
C3TRIS C3TRIS is offline
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Thanks for suggestion! I have modified the survey as a result. Hopefully, the question is more clear now.

https://wharton.qualtrics.com/SE/?SI...l9bFijeuqryWDb
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  #4  
Old Sat Mar 28, 2015, 01:12 PM
mharrell mharrell is offline
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Much more comprehensive! I would think that data would be valuable to you.
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  #5  
Old Sat Mar 28, 2015, 10:08 PM
Relentless Against SAA Relentless Against SAA is offline
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Thank you

C3TRIS,
Thank you for working on a new drug for PHN! Can you tell us anything about your research?
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