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C3TRIS Fri Mar 27, 2015 11:32 AM

New PNH Drug Survey - Patient Preferences

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:

We look forward to hearing your responses!

mharrell Fri Mar 27, 2015 02:23 PM

You'll probably get more response if you post the survey on the PNH support site,

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.

C3TRIS Fri Mar 27, 2015 11:32 PM

Thanks for suggestion! I have modified the survey as a result. Hopefully, the question is more clear now.

mharrell Sat Mar 28, 2015 02:12 PM

Much more comprehensive! I would think that data would be valuable to you.

Relentless Against SAA Sat Mar 28, 2015 11:08 PM

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

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