KEN Connectivity                                                                      

The CLEK study of keratoconus was the first collaborative study whereby information about keratoconus was gathered at different centres and combined to give a larger, more scientifically relevant sample. It included 1200 subjects in 15 different centres across the US. The first patient was enrolled May 31,1995, the last a year later and the patients were followed through for 8 years. It provided a good deal of information about keratoconus but ended up raising more questions than it answered - at least to some of us!

Most keratoconic research is carried out in First World countries. However, with the exception of some of the Scandinavian countries, these are the areas where keratoconus is relatively rare, Anecdotal evidence is now showing that prevalence of this condition may be much higher in India, the Middle east, South Africa and the Caribbean and possibly other "hot spots" around the world. It is hard to gather information about these areas as research grants tend to be granted more readily in First World academia.

We have formed the Keratoconus Evaluation Network (KEN) with the hope that professionals in this field can work together to gather information about keratoconus in these "hot spots". It is hoped that by combining information internationally we may create a database that will answer some of the new questions about keratoconus - not least its actual prevalence.

Aims

Diagnosis
The classical diagnostic indicators of the condition are rapidly becoming dated as we discover mild forms of the condition from patients attending laser clinics. Wider use of topography is also highlighting sub clinical forms which may mean that we also have to look more closely at amblyopias - maybe some of them are due to corneal distortion. So one of the first thorny issues facing this network is how do we actually now define keratoconus? This has to be the first burning issue!

Prevalence
Once we have a definition, there is a need for pilot studies to identify prevalence around the world. Many of the world's health organisations are now focusing on uncorrected refractive error as a cause of blindness. This is relatively easy to "cure" with programs to supply spectacles: however, keratoconus remains a challenge as people can be left with no more than Count Fingers vision for the lack if understanding that they need contact lenses in order to see and fulfill their potential as human beings.

Information gathering
Once we have the prevalence, we can then start to raise funds to start a truly international study of the condition. With the rise of treatments such as CXL, this may be the last chance we have for such a study. Once CXL is widely approved, many will opt to have the treatment as early as possible, and so questions such as how long the condition progresses may never really be answered in the future. On the flip side, the study will hopefully show how important it is to treat keratoconus as early as possible.

Join Us

If you have an interest in this study, we ask you join our forum to begin discussions on how we can start this project moving forward.

Dirk Booysen Dip.Optom FOA(SA), MC Optom (UK), CAS (USA), TMOD (USA)     South Africa

Lynn White MSc FCOptom    UK and Trinidad www.lwvc.co.uk