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Current topic: Management - Milder Forms
Current Question:
Current Question Your views of Drug Trials
JTSMA Chair Max Huxham has been recruited as a patient group representative onto the TREAT NMD Steering Committee for UK Clinical trials. This is for the proposed clinical trial with the new European TROPHOS drug specifically designed for Types II & III SMA (http://www.trophos.com/),.
It would be really useful to be able to collect some of your views on the general concept of new drug development for SMA.
So if you would like to help you can simply send us an email answering these three questions.

1. How do you rate the importance of clinical trials for SMA - very important / fairly important / not important / no opinion

2. What do you consider to be the most important use for a therapeutic drug in SMA - for example; improvement in function, strength, range of movement, prevention of further deterioration, walking, breathing etc. please explain your thoughts.

3. What is your opinion on the use of drugs which reduce the effects of SMA but do not provide a cure?

If you have any other thoughts or opinions on the matter please feel free to include those as well. All emails will be dealt with in the strictest confidence and no names will be used in any resulting documentation

Please Email your answers to christopher.reed@jtsma.org.uk
By letting us know your thoughts we help the clinicians and scientists better understand how to give the best Help for Today and Hope for Tomorrow

Thank you.

Max Huxham Chair of Trustees & Chris Reed Director of Support Services
Posted: Fri Sep 21, 2007 3:30 pm
  Author:
Chris at JTSMA

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