wet AMD - clinical trial - good idea?
Discussion
Hi,
my mother in her late 70`s has been recently diagnosed with wet eye age related macular degeneration.
She came back from the hospital today with this diagnosis.
And announced that she is joining a clinical trial that has been running for 4 years with a new drug.
She will either have injections once a month or twice a month.
Now, her eyesight has deteriorated but she can read a book with glasses etc still.
My question is this -
Is it a good idea to join a clinical trial?
Would she better off staying with the standard treatments available?
Sure, if the new drug is wonderful, then great.
But if not as good as expected or they experiment with different doses and frequencies of doses, there is the risk that she will end worse off than if she had gone with the accepted treatments used.
No idea at the moment what drug she is going to be on.
But i am a bit concerned as to whether she would make the correct decision.
Or what the correct decision should be.
Any thoughts or advice?
Thank you.
my mother in her late 70`s has been recently diagnosed with wet eye age related macular degeneration.
She came back from the hospital today with this diagnosis.
And announced that she is joining a clinical trial that has been running for 4 years with a new drug.
She will either have injections once a month or twice a month.
Now, her eyesight has deteriorated but she can read a book with glasses etc still.
My question is this -
Is it a good idea to join a clinical trial?
Would she better off staying with the standard treatments available?
Sure, if the new drug is wonderful, then great.
But if not as good as expected or they experiment with different doses and frequencies of doses, there is the risk that she will end worse off than if she had gone with the accepted treatments used.
No idea at the moment what drug she is going to be on.
But i am a bit concerned as to whether she would make the correct decision.
Or what the correct decision should be.
Any thoughts or advice?
Thank you.
Find out what the drug is and how it works. If it's delivered by injection my best guess is that it's an antibody or antibody-like, and blocks a protein called VEGF that stimulates production of (too many) blood vessels. If so, this mechanism seems to be very safe and yields a distinct improvement in many. Since its been on study for 4 years already it's pretty low risk.
Talk to the physician and ask what adverse events have been seen, together with expected benefit.
Talk to the physician and ask what adverse events have been seen, together with expected benefit.
I'm not sure how standard this is, but my understanding generally is that if people in a clinical trial that's reached the treating-people-with-the-actual-disease stage start to show consistently worse outcomes than people on the current gold-standard treatment, the clinical trial is stopped IMMEDIATELY, do not pass go, do not collect £200.
If it's been running for 4 years I think it's a fair bet that people are definitely not showing worse outcomes on the trial.
I'd always do the trial, personally.
Best of luck to her.
If you've not already been signposted to them, organisations like Henshaws - and I suspect there will be an MD specific org too - are very very good, and worth talking to before things get difficult (if things do get difficult).
If it's been running for 4 years I think it's a fair bet that people are definitely not showing worse outcomes on the trial.
I'd always do the trial, personally.
Best of luck to her.
If you've not already been signposted to them, organisations like Henshaws - and I suspect there will be an MD specific org too - are very very good, and worth talking to before things get difficult (if things do get difficult).
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