Message Boards for the CF Trust

Replies: 9 Pages: 1

preciousjewel

Posts: 59
Registered: 06-Nov-2006

gene therapy starts today??
Posted: 03-Dec-2006 11:01

Reply

Just read in the paper....The News of the World!!!!

That the £20 million trials are being lauched today!!1 How exciting is that?

dibbles

Posts: 19
From: liverpool
Registered: 07-Nov-2006

Re: gene therapy starts today??
Posted: 03-Dec-2006 11:05

Reply

Omagod, How great is that, I'm going out now to buy one. This is amazing news.

preciousjewel

Posts: 59
Registered: 06-Nov-2006

Re: gene therapy starts today??
Posted: 03-Dec-2006 11:08

Reply

ha ha Im ashamed to admit it i read that paper but like to read the trash every now and then!!.. Its only a small bit on page 13. x

sazg

Posts: 48
From: Rotherham
Registered: 05-Nov-2006

Re: gene therapy starts today??
Posted: 03-Dec-2006 11:51

Reply

Will send other half to go and get it, lets hope the trail goes really well.

Take care
Sarah
xxxx

lmstepney

Posts: 31
Registered: 06-Nov-2006

Re: gene therapy starts today??
Posted: 03-Dec-2006 12:46

Reply

There's a similar article in the Times. I recently saw a presentation by Eric Alton. He didn't say as the NOTW article states that the treatment is unsafe for under 12's. Over 12's or early teenagers are the most appropriate age group for the initial trials due to their lung condition. I got the impression that it is hoped that the product is available within 4-5 years.

Message was edited by: lmstepney

sunseasand

Posts: 74
Registered: 10-Nov-2006

Re: gene therapy starts today??
Posted: 03-Dec-2006 16:56

Reply

Yes I have heard that if successful it may be available by 2010. I think it was something to do with an aerosol spray which may help to correct the faulty gene. I don't think it was a 100% cure more a dramatic improvement if gene therapy is successful. Have they got the 200 patients already do anyone know? I understand that your consultant puts forward anyone they feel would be a good candidate for cf research. from sunseasand

Sooz

Posts: 1
From: Clackmannanshire
Registered: 03-Dec-2006

Re: gene therapy starts today??
Posted: 03-Dec-2006 23:03

Reply

I was under the impression that the age group for the trials had been lowered to 5 years. Has anyone else heard this? I may have picked this up wrong.

lmstepney

Posts: 31
Registered: 06-Nov-2006

Re: gene therapy starts today??
Posted: 04-Dec-2006 07:47

Reply

At the briefing around mid November. It was mentioned that the patients would be 12 years and, upwards into mid-late teens. The reasoning was that their lung condition would be around the mid-point. Not too congested (as in some older patients) and, not too healthy. It was also anticipated that the initial treatment may be nebulised but, expected to be in the form of an aerosol spray eventually.

lara

Posts: 7
From: bristol
Registered: 29-Apr-2004

Re: gene therapy starts today??
Posted: 06-Dec-2006 11:29

Reply

I also saw a brief item on the news on Saturday 2nd December I think. I watched the later news but nothing more so I checked the Cf truct website expecting to see something on the main news page. Alas nothing there, so searching the message board topics was the only way I found this thread. Surely we all need more specific news on the main news page of the cftrust site so that we don't have to find out exactly, what when and how it will be happening through just asking each other. Oh and the news item on TV I saw said cf trust had raised all the mnoney except for £2 million from the government.

Gemmafoy

Posts: 6
Registered: 29-Nov-2006

Re: gene therapy starts today??
Posted: 06-Dec-2006 12:20

Reply

Hi All,

Just thought I would respond to this thread.

Last Friday Rosie Barnes and Professor Eric Alton attended a press briefing on gene therapy for CF at the Science Media Centre. This was not to reveal anything new about gene therapy but to talk to some journalists who were interested in the subject following the news about Gordon Brown. Following this there have been a few articles in the papers and on the TV about gene therapy - this is information that has already been reported in CF Today and the Annual Review. As you know, we have been investing in gene therapy research for a long time since the faulty CF gene was discovered in 1989.

As a result of our investment in the UK CF Gene Therapy Consortium, next year a single dose trial for CF gene therapy will be given to around 15 volunteers with Cystic Fibrosis in London. This will provide important information on the correct level of dose and possible toxic effects.

At the same time, up to 200 people with CF in Edinburgh and London will be monitored for a year to measure vital functions. In 2008, up to 100 of these people will undergo a multi-dose clinical trial for CF gene therapy.

Any news on gene therapy will be reported in our magazine CF Today and if there are any new developments they will also be added to the news section of the home page. There is also an update on gene therapy in our annual review 2006 on the publications page.

If you have any questions please email us on enquiries@cftrust.org.uk .

Thanks everyone,

Gemma Foy
Press Officer
Cystic Fibrosis Trust