Keratoconus patient day 2021

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On 27 November, NIHR Moorfields BRC hosted an event for patients participating in the KERALINK trial, along with their parents, other keratoconus patients, relatives, friends and healthcare professionals.

The aim of the event was to share the outcomes of the keratoconus KERALINK study, learn about current research in keratoconus, and for the audience to input into future research priorities.

Keratoconus affects the cornea, which is the clear dome-shaped window at the front of the eye. In keratoconus, the cornea becomes weaker and thinner at its centre. This can make vision blurry and distorted. Keratoconus usually develops in a person's teens or 20s, and can worsen over time.

About the KERALINK trial

The NIHR-funded KERALINK study is a trial in 8- to 16-year-olds looking at the efficacy of ‘cross-linking’ as a treatment for keratoconus. Cross-linking is a procedure that uses ultraviolet light to strengthen the corneal tissue. The KERALINK trial has shown that cross-linking is a good way to stop the deterioration of sight in young people with the condition.

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At this event, attendees had the opportunity to:

  • learn about the KERALINK study and its results

  • find out what’s next for the KERALINK follow-up study

  • listen to testimonials of a mother and son who had taken part in the study

  • meet researchers and clinicians who specialise in this field and ask them questions

  • find out how to get involved in research, patient groups and fundraising opportunities

  • hear about and discuss current research, how research could be used and how to influence future research priorities

The event concluded with an interactive session looking at priorities for future keratoconus research. Areas identified as being important were: education for GPs, optometrists and schools; personalised contact lenses; causes and triggers for the disease; early screening programs; genetic studies; and non-surgical treatment methods.

Some comments from participants at the event:

“A very interesting and thought-provoking day.”

“I have never met another person with keratoconus or anyone who has had a cornea graft. On Saturday I spoke to four people who had a cornea graft. You have no idea how amazing that felt to be part of a group who were as unique as me!”

The event was funded by the NIHR Efficacy and Mechanism Evaluation (EME) Enhanced Dissemination Programme.

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