Cornea Connect Meeting 2014

Organisers: Dr Hannah Levis and Dr Victoria Tovell

Corneal opacification is a major cause of blindness worldwide. At the UCL Institute of Ophthalmology, the Cells for Sight Transplantation and Research team are working towards understanding the mechanisms of corneal disease in order to develop potential therapies to restore sight to many patients.

Our first ever Cornea Connect meeting was held at the Institute of Ophthalmology on Friday 14th February 2014. This was a patient engagement event and was the first of its kind to be held at the research institute. The aim of the day was to bring together scientists and patients with a common interest in the cornea and to talk about the challenges faced by both parties.

Attendees

The Guide Dogs

As researchers we can sometimes focus too much on the detail of our projects and forget the bigger picture. We need reminding of the real reason we are undertaking research, and as a translational research group this is particularly important.

Most of the CfS team have never met anyone with a blinding eye condition and as a result it was incredibly inspirational and motivating to meet and talk to the very people that our research aims to help.

Similarly, most of the patients had never been to a research facility, seen a laboratory or even heard first hand about the research being carried out. We had a good mix of patients and scientists, as well as a radio representative from RNIB and some amazing guide dogs.

The layout of the day

The day started with registration and morning coffee where it was a good chance to meet each other and have an informal chat to break the ice.

We had a morning programme of talks, with an introduction from Prof. Julie Daniels and 3 talks by members of CfS on their research relevant to the patient groups, and 3 talks by patients on how their disease affects their day-to-day life.

The discussion was informal with people asking questions after talks and offering to stand up and comment on the differences in their condition compared to that of the speaker.

The Morning Talks

Top; Mary Cox and Jenny Langley talking about their experiences with aniridia. Bottom; Hannah Levis, Victoria Tovell and Radhika Sheth talking about what we do in the Cells for Sight Laboratory

We then had a break for lunch when people could again continue to chat to each other and ask more specific questions to the speakers.

In the afternoon, we moved into a different room where stations where set up with A0 posters describing in more detail some of the research methods that we talked about in the morning session.

The Interactive Afternoon Session

This was a more interactive session and it meant the people had a chance to chat to each other about their interests. There was laptops set up with images of stained cells and pipettes to show what equipment we use in the lab, and examples of the clothing we have to wear in clean room labs.

The idea was that patients moved from one station to the other in small groups and could ask researchers specific questions. This was also an opportunity for researchers to ask patients any questions they had.

Lab Tours

We set up different zones in the laboratory which helped us to describe the main techniques that we carry out.

While this was going on, small groups of 4 were taken on tours of the research laboratories to see what it is really like to work in a lab. The small group size really allowed people to ask questions in a friendly environment.

At the end we all came back together in the original room for a final summing up and thank you. We asked all attendees to write feedback on a poster to help us see what people enjoyed and how we could improve for next time.

James Buller, a trustee from Aniridia Network UK, kindly filmed some of the talks. See below for links to the youtube clips.

Professor Julie Daniels

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Professor Julie Daniels, the head of the Cells for Sight research team, introduces the overall goal of the research group.

Mary Cox

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Mary Cox talks about how her life is affected living with Aniridia.

Radio Interviews

Leeanne Coyle from Insight Radio, the radio station of Royal National Institute for the Blind, came to the Cornea Connect Meeting to interview some of the attendees. Please use the links below to listen to the podcasts.

Feedback

The success of the meeting and the enthusiasm of all those who attended means that we plan to hold it annually to stay in touch with the patient groups and individuals that we have met via our Facebook page and our CfS webpage. Both groups gave positive feedback about the event and here are some of the comments from the day.