KERALINK Patient Day
The KERALINK patient day was coordinated by the BRC with funding from the NIHR Centre for Engagement and Dissemination. The event disseminated KERALINK trial findings so far, and ran a session for future priority setting in the diagnosis and treatment of Keratoconus.
The event was attended by patients participating in the KERALINK trial, along with their parents, carers and relatives; other keratoconus patients, representatives of the Keratoconus support group, optometrists and healthcare professionals.
Kerotoconus is a condition which effects the cornea, a cone like structure on top of the eye. In the sufferer, the cornea becomes thinner which can weaken the cornea and allow it to bulge. This in turn can blur and distort the vision. The onset of the condition is often in the teens and early twenties.
The KERALINK trial is looking at the efficacy of the cross-linking procedure, a minimally invasive treatment for keratoconus using light and eye drops, in children to stop the progression of the condition.
Presentations were made by the trial lead, Dr Frank Larkin, while other clinicians and statisticians talked about the ongoing work and results from the trial. One of the young trial participants came along with his mother to talk about what it was like having the cross linking procedure and the experience of being in a medical trial.
Education was at the forefront at the priority setting discussion . Patients were keen to address 'education' and 'understanding of the disease' especially amongst GPs (for early diagnosis), high street optometrists, schools and health care professionals - particularly around how medical professionals were informed about keratoconus and the ways of spotting the onset.
A key priority was communication with schools about the condition. Some felt that schools didn't understand the severity of the condition or weren't aware of possible changes which could be made to make the classroom more accessible. It was also felt that there was a lack of understanding around the incredible amount of time to be spent at hospital appointments to treat the condition.
Personalised contact lenses, shaped specifically to the patient was a high priority. Participants were also keen to have more information, knowledge sharing and tips on optimising contact lens wear.
Other research priorities included:
Linkage studies e.g. links with autism or Downs Syndrome
Early screening programmes
Non-surgical treatment/prevention methods
Progression vs age of onset studies