Blind and Visually Impaired Community
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Those of you who went through clinical trials, how did they go? (self.Blind)
submitted by ChipsAhoiMcCoy
I have the opportunity to go through a clinical trial for LCA and I was wondering how trials went for you guys as well to possibly put my mind at ease there is a lot of scary lingo in the paperwork but most of that’s I’m sure is there for legal reasons as a just in case something goes wrong sort of deal so I was looking to get some real world experience and feedback about this my particular trial is going to involve injecting my retina with some new jeans via CRISPR so I think it will possibly be a bit of an invasive procedure, but I’m not super sure how this stuff works at this point, the vision in that I is so bad that I feel like my vision would improve if I just stopped using it, so I’m not super super concerned about losing a little more vision in that I, but the benefits would be immense if it was a success so I’m really trying to weigh my options here thank you very much to all of you who can contribute!
rnaw94 3 points 1y ago
I'm currently part of a clinical trial in the UK for Retina Pigmentosa. They injected a gene product into one of my eyes, left the other as a control. I had the operation four years ago and there have been no downsides.
That said, there are always risks and your doctors will be able to tell you about what these are, their likelihood and potential impacts. You should be reassured though, that to get to this point they will have extensively tested whether it is safe and whether the risks are acceptable, and independent assessors will have reviewed their findings.
From my perspective, it's been great to be part of the trial, I've learnt more about my condition and the early results have been very promising. It is now a phase 3 trial which is the final stage before approval and I'm hoping they will do my other eye at some point too. It's given me hope and the staff at Moorfields Eye Hospital have been wonderful all the way through.
That being said, they need a lot of tests and regular measurement to get the information they need. It can be tiring and time consuming. I had my latest set of tests all day Monday to Wednesday this week and I was exhausted afterwards.
You should think about it, discuss it with friends, family and your doctors. Good luck with your choice and if you take it forward I hope the trial goes well!
That said, there are always risks and your doctors will be able to tell you about what these are, their likelihood and potential impacts. You should be reassured though, that to get to this point they will have extensively tested whether it is safe and whether the risks are acceptable, and independent assessors will have reviewed their findings.
From my perspective, it's been great to be part of the trial, I've learnt more about my condition and the early results have been very promising. It is now a phase 3 trial which is the final stage before approval and I'm hoping they will do my other eye at some point too. It's given me hope and the staff at Moorfields Eye Hospital have been wonderful all the way through.
That being said, they need a lot of tests and regular measurement to get the information they need. It can be tiring and time consuming. I had my latest set of tests all day Monday to Wednesday this week and I was exhausted afterwards.
You should think about it, discuss it with friends, family and your doctors. Good luck with your choice and if you take it forward I hope the trial goes well!
ChipsAhoiMcCoy [OP] 1 points 1y ago
How much of an improvement did you see in the eye that had the treatment? Was it a drastic improvement in your case? My big concern is that if I get this clinical trial done, does it lock me out of other trials? I don’t exactly know how CR I SPR works entirely, but one of my fears is that if they do inject the modification into my retina, if there is a new clinical trial that is happening a few years down the road, will the new trail be able to override the previous changes that were made? Not sure if this makes sense, but thank you very much for commenting I hope your results continue to be very positive!
rnaw94 2 points 1y ago
I had a small but temporary improvement in my night blindness in that eye. The results haven't been published yet, but my understanding is they have been broadly positive about slowing the deterioration of my sight. In my case, I have gone from about 16 degrees field of vision in my left eye to 10 degrees. In my right eye (the one they treated) it has gone from 16 degrees to 12 degrees. It's not much but every little helps.
I don't know about being locked out of other trials, but your doctors will be able to tell you. I imagine it is unlikely you could do more than one at a time, but I don't see why you couldn't do other trials after your first trial finished.
I don't know about being locked out of other trials, but your doctors will be able to tell you. I imagine it is unlikely you could do more than one at a time, but I don't see why you couldn't do other trials after your first trial finished.
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