Is there anyone co-ordinating research?

[K Reading]

I found this web site today and I am glad i did. I have had keratoconus for many years and on reading the messages left by other sufferers I can see all the problems I have had over the years have also been experienced by others. I found out lots of new information my optician didn't tell me.But what I am concerned about more than anything else is whether there is any research being done to predict and possibly halt ,maybe even reverse in mild cases, the occurance of this condition for future generations. Does anyone have any thoughts on this

[Andrew MacLean]

K

Welcome to the forum.

Yes, research is going on in almost every jurisdiction. In recent years this has led to the development of new therapies for Keratoconus, including Ferrarrah Ring, Intacs, C3R ... ... ...

The frustrating thing is that research is exactly what it says, and it may only be over a period of 20 years or more that the effectiveness of new therapies can be properly assessed.

For those of us who are older and whose condition is more advanced it may be that new therapies will not be effective, but we already benefit from research that was done in the past. My first cornea graft was done by Penetrating Keratoplasty. My second was done by DALK. In the future cutting may be done more rountiney by laser, C3R may become more widely available and the effectiveness of Intacs may be better assessed.

In the mantime, we soldier on! All the best

Andrew

[K Reading]

Andrew

Thanks for the welcome.
My reason for asking about research is that I have three children and I feel pretty helpless just waiting around to see if they will develop this condition too.
So far they are fine but I didn't start with this particular eye problem till I was 23 so who knows.
As keratoconus seems to be fairly rare I suppose large companies manufacturing lenses etc wouldn't see much profit in spending alot of money on research and it is down to individuals with an interest to make progress.
As to soldiering on of course you are right. Sorry if I seem a bit intense. I'm not a whiner really, honest! I just get a bit pushy when I think of my children. All part of being a mum probably.
Thanks for replying,
K

[GarethB]

Welcome to the forum.

Last years AGM, Mr Tuft from moorfields gave a presentation on KC and genetic links. More evidence points to KC being genetic and the inheritance being quite complex. It appears that a number of recessive genes need to come together to give a predisposition to the condition. This is because where identical twins were studied, there KC was distinctly different so the trigger in each may have been different. The study also showed that KC rarely went to a second generation and even rarer still to a third. I think where KC went to another generation was also influenced by ethnic group but I could be getting mixed up with another study or part of his presentation.

In a nut shell the chances of your children getting KC is very small.

The second positive not is that the treatment now for KC is vastly improved when compared to the options available when I was first diagnosed 20 years ago! Two years ago, I only had one lens option and it was pushing the technology to get good vision for me. Today that is not the case and a soft type of lens for KC may well be an option for me now.

Surgecal treatment is also far better than it was to.

I share your concern incase my daughter gets KC however worryied I am not. i know how far the treatment has improved for me and I know should she get KC the options for her will be greater still and I know she will not be alone and that she will be able to manage just as well as I do. I speak as someone who has had 2 grafts and where my old cornea the graft has attached to has taken an extremely rare turn for the worse.

Most hospitals are doing studies of one form or another, different types of soft lenses are being developed and plastic technology moves on so no doubt this will help with thr RGP lens strength so we can have them machined to tighter tolerances on things are very positive in my mind on the research front.

Regards


Gareth

[Michael P]

K

I may be wrong but I suspect a lot of time and money is wasted because the same research is being duplicated in many fields of medecine..

For example I believe KC and genetics is being researched in both the UK and Australia, and quite possibly elsewhere in the world.

Do the various researchers share the results around the world and in any event wouldn't it be better if the researchers in Australia said right, the UK are researching genetics we will look into other questions regarding KC.

It is clear from what John Dart said at the 2005 conference, funding is needed so are there better ways to use our resourses and what can we do to help?

[jayuk]

The hardest thing about co-ordinating such research globaly is that each perform the research for a particular reason. Funding is always restrcited, unless its sponsored by a large Pharm or Contact Len manufacturer...which introduces many other issues.

A platform that is useful for sharing such information are the Conferences held all over the world and allows Opthams and Optometrists to show case there developments and data......C3R is a good example of this...over the past 2 years theres been so many presentations relating to this treatment...another example is the laser cutting of corneas for PK's......theres many more......such as new material for contact lenses etc.....

[GarethB]

Some researchers actually look at the individual studies to try and pull the data together.

The benefit of duplicate research being done enlarges the sample population and allows for regional variations to be observed. Plus to show that any study is valid you must be able to repeat it. So a single studies showing a result may be fluke, two showing the same may be coincidence, three then chances are the observations are valid and this is the basis on which statistics are founded.

Here endeth todays lesson on research by the researcher

[Sweet]

Hehe thanks Gareth!!

To me i would be more acceptable to read the same results from different parts of the world knowing that it was done by different people. It is good to have a lot of research as then it can all be brought together to see if there are similarities etc.

Sweet X x X

[Michael P]

Yes I can understand the points made.

Nevertheless, couldn't results from supposedly sucessful research be verified after the event rather than running on parallel lines.

I am obviously wrong and it may not be possible but it just seems to me that more co-ordination could result in greater efficiency.

Jay, I believe Dresden is by and large the centre for C3R treatment and it is slowly being taken up in some other countries.

Couldn't this procedure have been adopted around the world much sooner with universal research. I guess I am being naive because the word "profit" no doubt is an important consideration

[jayuk]

Michael

To be honest new stuff does take time to become available as noone wants to take the risk of being the first to adopt it if theres negatives.

It would be extremely interesting to see what this procedure would be available on the NHS; now that there is substantial data. Im not really sure what the "norm" is for the big wigs to pass new treatments in terms of research data....but its one to wait and see I guess.

New stuff is always emerging.....and it does seem that Australia is one place where a heck of a lot of research is going on with KC.....

At my last appointment, I was told that the current dosage given during C3R maybe too high, and thus would need to be reduced to patients....that basis of this information I didnt question as I was running late...but again this is an emerging treatment. Patients with a lower Corneal thickness of 400 microns could also have this treatment performed at a lower dose......so all this people are now adopting......

Things progress I guess....and we wait...

J