Conferences

Retina UK Clinical and Patient Registry Focus Groups

  • Date and Time info: 4/07/2025 - 23/07/2025
  • Face-to-face

We need your help!

Retina UK is considering developing a secure UK-wide registry - a trusted, secure database combining medical and personal experience data from people living with inherited retinal conditions.  As with everything we do, we would really value input from members of our community.

The overarching goals of the project are to increase and improve the quality of data available to researchers, and to make it easier to find people to take part in clinical trials and gain access to treatments.

As such, we are holding a number of focus groups via Zoom to seek your opinions on the project and to understand your thoughts and attitudes to different aspects.

The focus groups will be formed of the following groups on the dates below:

  • Monday 21st July, 7.00-8.30pm - Parents/carers of children with inherited retinal dystrophies (IRDs)
  • Tuesday 22nd July, 7.00-8.30pm - Young adults (aged 18–30)
  • Wednesday 23rd July, 4.00-5.30pm - Older adults (aged 55+)
  • Wednesday 23rd July, 7.00-8.30pm - Adults (aged 31–54)

If you would be interested in taking part in this round of focus groups, please register by completing the form below. 

Retina UK Clinical and Patient Registry Focus Groups

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