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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 16-11-09, 02:38 PM   #1
TL226
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Default Being part of a clinical trial

Hi everyone,

Just over 20 years ago, when my late husband was diagnosed with HD (before they'd even identified the gene), a consultant told us that as they had a mouse model of HD they were expecting to be able to offer treatment for the disease within 5 years!

When my 23 year old son was recently diagnosed, he was told that he would be a likely candidate for clinical trails. I don't want to sound totally negative, but is this just the medical profession trying to give hope to patients? If my son does decide to participate in a trial and the effcts are positive what would happen at the end of the trial and the treatment withdrawn? Has anyone helped with a trial of this kind and what was the outcome?

So sorry, but I really need some positive hope......
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Old 16-11-09, 03:04 PM   #2
just1moreperson
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Default Re: Being part of a clinical trial

Hiya,

I'm 21 and tested positive aged 19. I've not been in any trials myself, I know Dave on here has been in plenty so maybe he will see this thread and reply.

But with regards to is it worth doing, definately! I was just a little baby when your husband was diagnosed and I'm not sure exactly what the doc was refering to when he said there would be treatments available in 5 years. I'm of the impression that before they found the gene in 1993 there wasn't going on in HD research, I could be completely wrong about that.

As for now well there is definately good reasons for your son to join trials. There's an organisation set up in early this decade called CHDI which has huge financial backing and it's only purpose is to find treatments and a cure for HD. I've spoken to HD researchers who tell me that the money CHDI has pumped into HD research worldwide has changed everything for them, it's made that big a difference.

So there's hope to be had, the trials going on are important. We're getting somewhere now so the more we help by joining studies then the quicker treatments will come.

Tc, Matt.
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Old 16-11-09, 06:41 PM   #3
colettew
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Default Re: Being part of a clinical trial

Definatley worth your son doing clinical trials. My husband is early stage and I am hopeful that clinical trials will save his life Our consultant believes that amazing stuff will be achieved in the next few years
It must be desperatley hard for you after what your husband went through but please try and feel more positive about your sons future.
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Old 16-11-09, 08:48 PM   #4
DH
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Default Re: Being part of a clinical trial

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Originally Posted by just1moreperson View Post
Dave on here has been in plenty so maybe he will see this thread and reply.
Somebody call?

Hi TL226,

As Matt says I've taken part in quite a few trials over the past 2 1/2 years since I got my diagnosis (I'm a non-symptomatic HD+ in other words I've got the gene but it hasn't manifest itself yet.). Oddly enough I did another research questionnaire thingie by phone today with someone from the University of Reading. However, I should mention that all the research I've done has been looking at different mental, physical and metabolic areas for benchmarking purposes and I've not taken part in any drug trials of any sort. I'm not aware of any being undertaken at the moment but the hope is that the first will start in the next 18 months - 2 years or so. Even then, I'm not sure which approach they will be taking first with the drugs - I don't think they will be looking to "cure" HD (I don't think that is possible) but to either delay the onset (which I believe WILL happen) or to alleviate some of the symptoms (which again I believe WILL happen).

So there is hope, and I firmly believe that by the time I'm scheduled to become symptomatic (going by family history in around 15 - 20 years time) that the advances in drugs will mean I will never become symptomatic. Those that are symptomatic will have there symptoms virtually cleared.

This is why I put myself forward for every trial that comes up. Every trial or piece of research needs guinea pigs to prod and poke and one day a trial that comes up may be the one that saves my life - and more importantly my (untested 11 yr old) daughters' life.
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Old 16-11-09, 08:53 PM   #5
DH
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Default Re: Being part of a clinical trial

Oh, and as for your son and should he join in the trials of any description? Well, as far as I'm concerned he should throw himself into all of them - it's all part of doing something positive about his condition, not letting it get to him without a fight.

And I'm guessing that your local research centre will be the same as mine - Addenbrookes in Cambridge. Drs Barker and Goodman are both lovely people and tell your son that there are some very pretty nurses there as well.
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Old 16-11-09, 11:29 PM   #6
just1moreperson
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Default Re: Being part of a clinical trial

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Originally Posted by DH View Post
I've not taken part in any drug trials of any sort. I'm not aware of any being undertaken at the moment but the hope is that the first will start in the next 18 months - 2 years or so. Even then, I'm not sure which approach they will be taking first with the drugs - I don't think they will be looking to "cure" HD (I don't think that is possible) but to either delay the onset (which I believe WILL happen) or to alleviate some of the symptoms (which again I believe WILL happen).
That's what CHDI want to do in the next 12-18 months, to have more than 1 drug being trialed. So definately things coming soon.
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Old 17-11-09, 01:06 AM   #7
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Default Re: Being part of a clinical trial

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Originally Posted by DH View Post
And I'm guessing that your local research centre will be the same as mine - Addenbrookes in Cambridge. Drs Barker and Goodman are both lovely people and tell your son that there are some very pretty nurses there as well.
Hi DH. Dr Barker is who my sister has been referred to. I know you say they are lovely people but do they have a great understanding of HD and are they forward thinking? Are they likely to mention trials and such to my sister? Inother words, I quess what I'm really asking is will they take care of her? Will they be helpful? After the run around she has had for the past year I just need to know she will finally be in safe hands.
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Old 17-11-09, 10:03 AM   #8
DH
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Default Re: Being part of a clinical trial

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Originally Posted by telibeli View Post
Hi DH. Dr Barker is who my sister has been referred to. I know you say they are lovely people but do they have a great understanding of HD and are they forward thinking? Are they likely to mention trials and such to my sister? Inother words, I quess what I'm really asking is will they take care of her? Will they be helpful? After the run around she has had for the past year I just need to know she will finally be in safe hands.
Have no fear on that count. Roger (Barker) and Anne (Goodman) are both terrific, and the staff are first rate. Your sister will need to say "I want to be part of any research and trials that come up" because they won't assume she wants to take part in anything. They are both specialists in the field of HD and as such have a very in-depth knowledge of the subject. However, don't expect anything to happen instantly - she won't get there on Friday and be taking part in in-depth research on Monday, it just doesn't work like that. More like get there this month and some stuff may happen in the new year. One piece of research that I've recently taken part in for Anne took her 2 years from initial concept to finally getting it underway... standards are high.
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