Home         Forums  

Go Back   Marrowforums > Treatments > Drugs and Drug Treatments
Register FAQ Search Today's Posts Mark Forums Read

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

Reply
 
Thread Tools Search this Thread
  #1  
Old Fri Mar 27, 2015, 10:32 AM
C3TRIS C3TRIS is offline
Member
 
Join Date: Feb 2015
Location: Pennsylvania
Posts: 2
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.
Reply With Quote
  #2  
Old Fri Mar 27, 2015, 01:23 PM
mharrell mharrell is offline
Member
 
Join Date: Dec 2008
Posts: 11
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.
Reply With Quote
  #3  
Old Fri Mar 27, 2015, 10:32 PM
C3TRIS C3TRIS is offline
Member
 
Join Date: Feb 2015
Location: Pennsylvania
Posts: 2
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
Reply With Quote
  #4  
Old Sat Mar 28, 2015, 01:12 PM
mharrell mharrell is offline
Member
 
Join Date: Dec 2008
Posts: 11
Much more comprehensive! I would think that data would be valuable to you.
Reply With Quote
  #5  
Old Sat Mar 28, 2015, 10:08 PM
Relentless Against SAA Relentless Against SAA is offline
Member
 
Join Date: Sep 2013
Posts: 77
Thank you

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


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
NORD PNH Patient and Family Meetings in 2016 Marrowforums News and Events 1 Wed Sep 7, 2016 09:46 PM
NORD to Hold 18 PNH Patient and Family Meetings in 2015 Marrowforums News and Events 1 Sat Mar 7, 2015 01:37 AM
AMY-101 for PNH Gains Orphan Drug Status Marrowforums PNH 0 Wed Nov 26, 2014 01:01 AM
NORD to Hold Ten PNH Patient and Family Meetings in 2014 Marrowforums News and Events 5 Mon Sep 1, 2014 08:30 PM
NORD to Hold Six PNH Patient and Family Meetings in 2013 Marrowforums News and Events 0 Thu May 2, 2013 11:44 AM


All times are GMT -4. The time now is 09:57 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org