UK Keratoconus Self-Help and Support Association

Hi Everyone,

Calling all owners of corneas that have been cross-linked!

NICE are about to announce a four week public consultation period on the draft revised guidelines for cxl. It's a positive sign that they're prepared to review the guidelines, for many PCT's it's a reason not to provide the procedure, mainly based on cost but with Moorfields now offering the treatment and NICE reviewing guidelines it's important that where the opportunity for feedback we seize the opportunity!

NICE have updated their website today announcing that the consultation will be spring 2013 and results will be published in summer 2013. (see link) http://guidance.nice.org.uk/IP/724

They're yet to announce the exact dates for the consultation but we would urge anyone that has had the procedure or are waiting to have it please register your interest to keep informed.

You can set yourself up with a log in, and receive e mails when the crosslinking pages are updated here: http://www.nice.org.uk/registration/index.jsp?action=settings_ipalerts&ipId=11996

I will keep you updated on the consultation period as soon as it opens.

Thanks

Claire

Hi Everyone,

The dates for the NICE public consultation on CXLwill be May 24th to June 21st 2013.

As previously mentioned - if you wish to be part of the consultation you will need to register interest here:

http://www.nice.org.uk/registration/index.jsp?action=settings_ipalerts&ipId=11996

If you have any questions/need assistance give me a shout on here.

Thanks

Claire

Hi All,

So we're in full consultation swing and NICE have published reviewed guidelines on Crosslinking.

There is a heap of information to wade through on the nice website the main page being here: http://www.nice.org.uk/IPG320

The main documents that you will find interesting reading are:

1. The main research document, detailing outcomes of significant study trials: http://guidance.nice.org.uk/IPG320/Overview/pdf/English

2. The draft guidelines: http://guidance.nice.org.uk/IPG320/DraftGuidance If you are registered with NICE (anyone can be) you are able to leave comments on each section of the draft guidance.

In summary the draft guidelines suggest that the epi off procedure now has enough research to support endorsement from NICE. Epi on and other variations on the procedure require further research and clinical trials.

This is promising news, but note this is only recommendations at this stage and NICE are currently in a period of consultation so it's not a done deal yet. Hopefully we're moving in the right way.

Would be interesting to know how many of our members have had cxl and which type of procedure they've experienced? Feel free to post here.

Claire

Thanks, Claire. We do hope that UK forum users who have had CXL done will contribute to this consultation. In the review that was carried out for the new draft guidelines, the authors say 'there is no information on quality of life effects' and that it would be 'useful to have some measure of the patient perspective on the procedure and follow up'. So NICE is looking for evidence of how having CXL affects people's lives and the difference it makes - something only those who have had it done can tell them!
Sorry to add another link, but it is really useful to look at the guide that NICE have produced for patients wanting to comment on guidance www.nice.org.uk/media/EA6/CD/Contributi ... ce0706.pdf
especially section 3 (Practical advice on giving your opinions)
Anne

Just a reminder that this consultation closes next Friday, 21st June. So if you want crosslinking to be generally available on the NHS, please add your voice so that NICE appreciate how important this is for people with KC.
Thank you
Anne

Thank you for this Claire and Anne. I found it hard to figure out where to go initially but put in a couple just now on the draft document.