Hi! Long time, no write much; I know. I have, however, been lurking in the background and Lin has been keeping me apprised of some of what is happening. Certainly not all, but some.
Some of what she has said involves Facebook members and clinical trials. You guys rock!
Lin told me one member has been patiently/impatiently waiting for a trial with LumiThera. That was the page I just did “on assignment”. The one on photobiomodulation.
Lin also told me a member was being recruited for a clinical trial using stem cells. The member thought of me – and my obsession with stem cell research – and wondered why I was not being included. After all, one of the sites is Philadelphia.
First of all, I want to thank the member for thinking of me. The way we are going to get this stuff beat is to all work together both sharing and advancing knowledge. I am feeling that our time has come and the research is advancing quickly. This is because thousands of people like us are willing to be “lab rats” to get the job done.
Secondly, I want to address his query as to why the stem cell obsessed old lady is not beating down doors to get into this study. A big reason is this: they don’t want me!
I agreed to do the APL-2 study several months ago. I have integrity and am good to my word. Also, clinical trials most often look for treatment naive subjects. That means you cannot have been in any other study.
Another reason is my eyes are not bad enough. This is a phase 1 study and the best corrected acuity for this study is 37, pretty impaired.
Phase 1? A quick review here: phase 1 studies are for safety and tolerability only. Are you going to have something really weird happen? What are the reactions to this procedure and can we put up with having those reaction? Any effect achieved is gravy. We look for the effects when we do phase 2 which is a “proof of concept” phase.
Now 37 as a measure of acuity had me a little stumped. I am used to the ever popular 20/xxx notation. That is you can see at 20 feet what normal eyes can see at xxx feet.
Precision-Vision.com published a handy dandy little Visual Acuity Ranges and Visual Acuity Notations chart. The thing is sort of a Rosetta Stone for equivalent notations, true Snellen fractions, magnification requirements and – voila! – visual acuity scores. Turns out visual acuity scores are no more than letter counts.
If you have a visual acuity score as required by the stem cell clinical trial, your Snellen fraction is worse than 20/320. In other words you see at 20 feet as well as people with good vision see at 320 feet or even further away. This is in the severe vision loss range.
My vision is probably in the moderately impaired range. Those are Snellen scores from 20/80 to 20/160 according to the chart. Bluntly put, I got in the APL-2 study partially because they are confident enough they won’t screw things up that they are willing to give the experimental treatment to people who still have fair vision.
The LumiThera treatment? Guess what all you folks with mild vision loss…that one will be for you! They are working with light therapy to reduce drusen size before there is significant vision loss. Yippee!
So, here we are, working together to share and advance knowledge. Severe loss, moderate loss and mild loss people all pitching in to contribute where they can. Sort of gives you a warm and fuzzy feeling; doesn’t it?
And by the way, guys? You rock!