keratoconus research - tell us your priorities

[munster]

How about research into early KC diagnosis. Looking at ways to better identify KC at very early ages or stages. I know a few people who got diagnosed with KC late.

Maybe start with kids. Any children with short sighted problems should all be cornea scanned regularly to spot signs of KC progression. That way CXL can be performed much sooner, thus reducing advanced KC complications in later life.

[Steven Williams]

Not been here for a long time- nothing much changed - same Q and answers from same people but this is an interesting development:-

My contribution:-

1.

How about researching what actually causes KC? Bit ambitious I know, but if we can ever get away from treating the symptoms and treat the cause instead, it would be a massive step forwards

Spot on Dan B

In particular is this the cause - dry eyes>natural reaction eye rubbing>development of KC.

2. does wearing contact lenses exacerbate the progression of KC?

3.does any current treatment successfully stabilise KC (eg CXL)?

[Elizabeth Mair]

I would like research into lenses suitable for patients with dry eyes.
I've had to give up on lenses due to dry eyes- Vision was very variable depending on how dry the lenses were and they got really uncomfortable causing red eyes. I tried lots of different dry eye products but I'd prefer lenses which were more suitable as drops don't remain in the eye all day.

[andytraill]

I'm not sure if it would be an area that they would be interested in but some form of cheap standarised topography scanning method with a link to a centeralised database perhaps? More a of a research enabler than pure research I suppose. It's just that as someone who has moved around a lot I know that there is a lot of data about my eyes out there in discrete little packets dotted around (probably in cabinet drawers) various eye clinics both in the private sector and NHS but they aren't linked up or visible so largely worthless for research.

Maybe it could even be achieved by law "all scans and eye test results must be submitted to the national database in the following standard form"? Perhaps the research aim could be to define the benefit such a database and/or standarsised data form could leverage?

[GerardPMD]

I would like to echo the above post!

KC being a rare and diverse condition, it's a shame that most of the research papers in the literature are based on just a small number of local patients. I suspect it will take larger statistical samples for researchers to make breakthroughs in understanding the disease, and for patients to be better informed about the statistical outcome of various treatments based on evidence. I would love to see a large (anonymized) database which keeps track of the history of patients (i.e. a log of visual acuity, curvature and treatments as a function of age, perhaps with some additional information such as gender and ethnicity).

If hospitals are unable or unwilling to centralize their datasets, this might be an area where a researcher could collaborate with a self-help group to build a sensible database.

[Loopy-Lou]

research needs to pay more attention to lens in my view because surgery gets the lions share of funding and lenses are the mainstay of maintaining sight before/after surgery, everything depends on the lenses. I'm concerned about long term lens wear too.

[Loopy-Lou]

I'd also like to see some research into the emotional/social impact aspects of KC having just posted on the 'panic' thread this reminds me of the psychological impact of KC. There are members with mental health difficulties here and sight can play a part in this. Socially - looking at this might aid the case for an increased criteria's for visual registration [temporary or otherwise]

[space_cadet]

Eye rubbing - help or hinder the acceleration of KC is a good one

Id like to also see some form of what can be done to raise the public profile of KC so when someone is freshly dx they don't instantly go WTF is that!

[Anne Klepacz]

Thanks to all who have contributed to this thread. But please keep the ideas coming and/or tell us which of the suggestions so far are the most important. Fight for Sight, the charity that funds a lot of research into eye conditions, is also consulting eye charities like ours to find out what research the people affected by eye conditions want to see funded. It would be great to see more research that is driven by OUR needs, rather than just by the particular research interests of the PH D students and others in the research field (not that I'm knocking all the excellent research that has increased the options for those with KC in recent years).
We're being given a voice - let's use it!
Anne