Cross-linking clinical trial

[liam82]

Hi, i was just wondering if there are places in the uk already offering epi on cxl?

Ive had epi off cxl on my left eye, but my right eye is still very strong. However this weekend my optician has said it might be time to have cxl performed on it, as the KC is progressing.

But id rather take the least risky option with this eye.
Having read alot of people saying they had negative results with cxl, coming away with worse vision- whereas i was very lucky and had decent results.

[russell_anderson]

I might well be interested but it would depend in the time required and whether I would be suitable.
I am 67 years of age and was told over a year ago that I had a cornea problem (I was initially sent to be checked for what was thought to be a cateract problem).
I am still able to function reasonably happily with spectacles although I definitely suffer from "blurring".
I have suffered from myopia and astigmatism from a very young age.
I was a keen sportsman and therefore moved to contact lenses in my teens but found them very uncomfortable and used them only for sport.
I live in the Portsmouth area and from what I have read we have good people in the cornea field locally at Southampton NHS Hospital and a private clinic - Optegra.
My doctor offered me the option of an appointment with a specialist from Optegra who also does NHS work but I haven't pursued it further because I hate the thought of a transplant and I have read of a great deal of pain after the operation and in other treatments. This option sounds as if it is potentially much less painful and time-consuming!

[Ian Miller]

Hi Liam82

I had epi on cxl privately just under a year ago on my left eye (my right eye is relatively stable). It was done by David O'Brart at Westminster Bridge Consulting Rooms, St Thomas', London http://www.davidobrart.co.uk/Keratoconus.html.

He makes scratches in the epithelium, rather than removing it totally, and I believe he has been involved in trials showing that this works as well as epi off, by using a new formula of riboflavin.

It was still very uncomfortable for the first few days after the procedure though (the first 48 hours especially), but I guess it's different for everyone.

I'm due to go back for another follow up in a a month or so, but the initial indications seemed to be that KC progression had slowed/halted in the treated eye...fingers crossed!

There are probably others doing epi on as well, but it was Mr O'Brart who my optician recommended for cxl treatment (epi-off or epi-on), and having had the treatment, I would happily recommend him too. He said he used to do epi off, but there's apparently no need now that the new formula of riboflavin is available.

Good luck with whatever you decide.

Ian

[Jezzafletcher]

Hi Dan - I guess I am one of those who ultimately has had graft and therefore am now way off the scale for this set of questions - especially as i have recently become registered as partially sighted on my last visit to Moorfields a month ago! However I will answer from the perspective of.... if I had had the benefit of hind insight and such a form of treatment had been available/an option years ago.
Would I have gone for this radical option? Absolutely yes - I would grab anything that offers some hope - I always have done! I was diagnosed in my very early 20's and have tried all options for the next 20+ years.
Travel? Costs? Not a problem - it takes in excess of 3 hours each way on public transport for each visit to Moorfields - there is no cost too high when waiting for some new development. The visits may not always benefit me but the learning from me may help others in the future. I have often had hopes for the future and ultimately had graft. This was as a result of someone's death, the ongoing commitment of professionals to learn/treat and the experimental treatment of others before me.
Good luck Dan and all those who can and do sign up!
Jez

[Ian Miller]

Hi Dan

I guess I should have replied to your original post, as well as to Liam's question about epi on cxl...

1. If you were eligible for this trial, would you be keen to participate?
My KC is relatively advanced now, although I still manage with RGP lenses during the day, and as stated in a previous post, I have already had cxl on my left eye. If I knew what I know now when I was first disgnosed with KC, then yes, absolutely; I would have grabbed any chance (within reason) to try and stop the progression of KC at the very early stages. Without the benefit of hindsight, possibly. The possible risks associated with any new treatment do concern me; I managed fine for a number of years with glasses, and at that stage, I'm not sure if I would have wanted to take any unnecessary risks with experimental treatments.

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?
Answered above.

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.
It's a bit of a pain, especially if travel has to be undertaken when not wearing RGP lenses (as I can't read any of the signs on public transport when wearing glasses!), but it is possible assistance from family/friends. Reimbursement of travel costs would be a positive, but it would not make any difference as to whether I decided to participate or not.

4. Are there specific things that would stop you participating in the trial, even if you were eligible?
That's a difficult one to answer! I think i'd want a bit more detailed information about the treatment, and any lab tests which have already been undertaken. Then it would just come down to weighing up the potential risk/possible gain.

Good luck with the trials

Ian

[neilm232]

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

Yes

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

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.

Yes

4. Are there specific things that would stop you participating in the trial, even if you were eligible?
Not that i know of

[MEHeyedoc]

Hi everyone,

Many thanks for all your replies; It's been very useful to get input from this forum.
An update: we submitted an outline application for funding at the end of May. We expect to hear something by the end of the summer. If we get through this stage, a much more detailed application is then required. Final approval is looking like the end of the year/early 2013.

I will update this forum on our progress to keep you all informed. If we're fortunate enough to get this trial off the ground, I'll come back with much more information for you all to digest.

Regards,
Dan

[Anne Klepacz]

Many thanks for this update, Dan. I'm sure we're all hoping the MEH application will be successful, and look forward to hearing more news as soon as you have it.
Anne

[s_lippy]

Hi Dan,

My 18 year old son at his last clinic appointment was advised to think about cross-linking as his sight/cornea is deteriorating somewhat since his diagnosis of KC in November 2011.
I would be interested in hearing from you and wether you are successful in your quest for funding to commence the trial.
My son has recently been turned down for funding to have treatment provided by the PCT, however he would most certainly consider participation in clinical trials at John Moores.

Regards,

Sarah

[SusanChase]

That's a good offer and I know many people will participate on this. Also give them idea what benefits should they get for this trial and it is a good idea that patients should undergo first in diagnosis. I've been also using this application http://www.studyscavenger.com which help know more about clinical trial and studies.