RGA 314 gene therapy

[Slattery]

my doctor asked me to participate in phase 3 RGA 314 gene therapy for macular degeneration. I received the reading material to decide if I want to enter the clinical trials. When I read the possible ricks of the procedure, this statement worried me “once RGA 314 is given to you, there may not be a way to reverse whatever effects it my have, positive or negative “ what is your opinion, have you been in a phase 3 clinical trial?

[tallyho]

what at the side affects? In order to get to phase 3 then lots of work would have already been done I would give it a try if the side effects were not to bad.

[TokeenAk]

I have both the dry and wet AMD. Have been treated with Eylea for almost 2 years. I'm in a trial to study dry AMD and its progression. All I have had to do is give them a DNA sample.They give you a number and that becomes your identity. At the end of the year will find out there results. I don't know how to advise you but i wish you the best.

[StokeySue]

In a sense that's true of all medications - how would you reverse the effects of penicillin or paracetamol (acetaminophen)? But of course gene therapy is not ordinary medication, and my guess is that would be pretty standard wording for a gene therapy study - one a gene is overwritten, you would not be able to change that, it is described as a one time only treatment - which is great if it works, kind of ok if it does nothing at all, and obviously a problem if it has any adverse effects.

I have not participate in such a trial and I have not experience of gene therapy - but I did work on on clinical trials for a long time. The key is informed consent - only agree (consent) if you feel you have all the relevant information and you are comfortable with the study. You should be given a chance to discuss all the pros and cons with an investigator or another member of the research team, and to ask questions. But ut us your decision, and if you consider you are being pressured, or it feels things are being glossed over, it is fine to decline.

Sorry, late response