Retina patient day 2012

22 May 2012

Patients with retinal degeneration and their families gathered in London on April 21st to attend the first UCL/Moorfields Biomedical Research Centre for Ophthalmology “Retina Patient Day”. Over 250 attendees had the opportunity to interact with more than 40 clinicians and scientists from Moorfields Eye Hospital and UCL Institute of Ophthalmology Department of Genetics, who provided updates on their research into developing effective treatments for blinding retinal conditions.

The day began with a series of short talks delivered by the senior investigators leading the research effort. Professors Robin Ali, James Bainbridge and Tony Moore were joined by Drs. Lyndon da Cruz, Michel Michaelides, Rachael Pearson and Andrew Webster in setting out how laboratory and clinical studies are rapidly enhancing our understanding of how best to treat inherited diseases that cause blindness.

The researchers delivered informative explanations of how advances in basic science are gradually being translated into clinical trials – the audience was told of the progress that was being made but that further rigorous work was still required in order to develop more effective treatments.

The centrepiece of the “Retina Patient Day” was a unique and much-appreciated opportunity for the attendees to interact with dozens of clinicians and scientists, which we arranged in four broad ways: information stalls, a chance to ‘meet the doctor’, ‘meet the scientist’ and ‘meet the counsellor,’ an artist’s workshop, and most importantly, over 30 poster presentations explaining our research in terms that attendees could relate to. The scientists presenting their posters explained their area of research and how it fits into the broader effort of seeking therapies for visual disorders; they answered many excellent questions put to them by the attendees, who were keen to understand more about their conditions and about the research into treatments.

This opportunity to engage with scientists at the forefront of delivering innovative therapies is not often afforded to people with vision loss, and the interaction proved very welcome.

Some feedback from attendees:

‘Very enlightening and educational, really delighted this patient day has been put on. Worth travelling from S.Wales!!!’

‘Extremely informative, one to one discussions with the professionals. Definitely will come again’

‘Well organised event with very helpful speakers. Like the poster rooms for specific questions’

Following these fruitful and energetic interactive sessions, the day was brought to a close with an insight into the work of RP Fighting Blindness and Moorfields Eye Charity, two of the organisations whose generous support make the research being discussed (and the awareness day itself) possible.

Attendees were also given an opportunity throughout the day to submit questions to the lead investigators – these questions covered a range of topics and were answered by our panel of experts.

The Retina Patient Day 2012 was an excellent opportunity for patients with retinal degeneration and their families to engage with researchers involved in developing new treatments. Commenting on the day, Prof. Robin Ali, Head of Department of Genetics and the BRC Gene Therapy Theme leader, said “The day has been a great success. We aim to hold a “Retina Patient Day” every year. Patient engagement is an essential part of developing an effective translational research programme. Our team not only look forward to further opportunities to explain our work to patients and their families, but to involve and learn from those who may benefit from it in the future.”

Page last modified on 22 may 12 09:49