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Hep C Discussion Forum -> General Discussion -> Trials
Post Info TOPIC: Trials
Cinnamon Girl


Guru

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RE: Trials
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That`s good, Nirmalee, hope you hear back from them with some positive news.   I definitely agree that people need to be proactive, that`s certainly the case for a lot of people over here at the moment, and it applies to people in other countries just as much.   Sounds like you had enough of being messed around last time!

Keep in touch...and take care.



 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
dragonfly


Senior Member

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Posts: 395
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Hi Jill,

I've spoken to someone in Birmingham and she told me to contact Kings and St Mary's .  St Mary's are getting back to me asap - apparently they have been looking for certain categories of study.  Anyway if I can get on a list of some sort ..... I think patients here need to know that they need to be extremely proactive in their quest for treatment.  Last time I had to make all the phone calls and write all the letters.  If I hadn't phoned up twice a day I wouldn't have known that the  committee for NICE had not received my paperwork as it was on someone elses desk!

Let's see what happens.

Thanks for your support.

Nirmalee



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dragonfly


Senior Member

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How do you get on a trial in the UK?  My consultant says that no  troals are taking place for non-interferon therapy but I read in my newsletter that some of the workers at the Hepc C trust are on one.  Getting desperate now as I am going down with chest infections all the time.  Just recovered from pleurisy and now have pnuemonia.  Help - any advice gratefully recieved.

Dragonflyxxx



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Cinnamon Girl


Guru

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Posts: 5629
Date:
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Hi Dragonfly, yes, I read that article too!  As far as I know, there are clinical trials going on over here in the UK but suitable ones don`t come up that often, and I know with your tx history you definitely need one that is interferon-free.  Your Consultant is the person who should keep you informed about appropriate trials for you, but I know that doesn`t always happen.

This NHS site is a good place to search for trials, you can filter your search for `only trials recruiting now`...

http://www.nhs.uk/Conditions/Hepatitis-C/Pages/clinical-trial.aspx

It might be worth speaking to someone at the Hep C Trust too, they`re very friendly and helpful.  Here`s their helpline contact numbers... 0845 223 4424 or 020 7089 6221,  or you could email them...helpline@hepctrust.org.uk

So sorry you`re still having all these health problems, it must be a struggle for you.  Keep looking and stay hopeful, something should come up for you at some point, and the sooner the better!

Take care, Jill xx

 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
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