Cross-linking clinical trial

[vintagerose1962]

Hi, I have been this thread, only found it a few days but have come back to re read it.

Question: Has anyone here had crosslinking at Moorfields London yet?

My daughter is due to have this done early January 2014, but I have no idea if the procedure is epi or off.

I more worried now than ever reading this thread regarding conventional cxl is that epi off, with results in possible scarring and infection. What does this mean anyone, and how easily is it treated. The epi on talks about less pain.

So what really is the difference between the two?

What I do know researching consultants at Moorfields, the epi on cxl can be done privately at Moorfields private wing. So is this the same procedure done at the same hospital on the nhs?

or is it the epi off done on the nhs at Moorfields?

if anyone has the cxl epi off could you share your experience please, like haze, infection etc.... because I am thinking of going private for my daughter, even though she is booked in for January on the nhs.

I find this whole thing tiring and I am exhausted for knowing what to do for the best of my daughter.

many thanks in advanced.

[Steven Williams]

http://www.ophthalmologymanagement.com/articleviewer.aspx?articleID=108410

http://www.cxlusa.com/treatment-options.aspx

[mattcox]

1. If you were eligible for this trial, would you be keen to participate?

N/A

2. If you weren’t eligible (e.g. KC too advanced, rigid contact lens wearer or you’ve had a corneal graft), would you have been likely to participate if you could wind the clock back?

Yes. As people have said it is easier to look at this in hindsight but the small risks involved in the trial to me seem insignificant in comparison to the prospect of grafts, hard contact lens wear etc...

3. For those of you living outside London, would travel to London for treatment and assessments be problematic? We would reimburse all your travel costs.

No. I would be prepared to travel to have a potentially beneficial treatment.

4. Are there specific things that would stop you participating in the trial, even if you were eligible?

No. As long as the risks are as described I would have volunteered for a trial such as this if it had been recruiting at a time when I was eligible.

Any comments/questions/suggestions welcome!

Is this part of your PPI process or will there be other opportunities for people to be involved in the study design?