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Research, drugs, treatment, new diagnosis Forum for medical issues, and for the recently diagnosed (and families)

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Old 22-11-09, 10:18 PM   #1
waz1980
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Join Date: Oct 2009
Location: Crawley
Posts: 121
Default Clinical trials

Hey people
Im going to try and get my mum onto some trials next year if I can. Not really sure how to do it as its all new to me.
She is early onset and I would like to get her on the memantine trial as this appears to be the best upcoming treatment. Its horrible to see how its affecting her already and I would love for her to grow old and so would she. Im very hopeful that she will get old, she is currently 46. Come on treatments!!
Whats the best/easiest way to get onto trials?? through her consultant? eurohd??
Any help will be much appreciated
Thanks
Wayne
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Old 24-11-09, 10:25 AM   #2
colettew
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Join Date: Feb 2009
Location: Marlow, Bucks
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Default Re: Clinical trials

Hi
there is a website which gives details of clinical trials. I just google clinical trials. I think Dimebon is one coming up or actively recruiting. I do know it is being done in London at Guys and Thomas's. Our neurologist has advised of us trials and I am hopefull some really good ones will be coming up over the next few years.
Good luck
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Old 25-11-09, 04:40 PM   #3
just1moreperson
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Default Re: Clinical trials

Hi Waz,

I'm not sure on what studies and trials are going on that your mum could participate in. But the Registry project by Euro HD Network might be a decent place to start https://www.euro-hd.net/html/registry/about/enrolment you can find your nearest study site on there and maybe once involved at the study site you can ask them about trials etc.
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Old 25-11-09, 06:14 PM   #4
waz1980
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Location: Crawley
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Default Re: Clinical trials

Quote:
Originally Posted by just1moreperson View Post
Hi Waz,

I'm not sure on what studies and trials are going on that your mum could participate in. But the Registry project by Euro HD Network might be a decent place to start https://www.euro-hd.net/html/registry/about/enrolment you can find your nearest study site on there and maybe once involved at the study site you can ask them about trials etc.
Thanks to both of you for your help. I will try and register my mum on the website. Im going with her in Jan to see her consultant and will be asking lots of questions, especially about memantine if its supposed to significantly slow down progression.
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