Skip to content

Retina UK community survey

We need your help as we develop a new strategy for how we use research and innovation to improve the lives of people with inherited retinal diseases.

We aim to put the needs of people with inherited retinal diseases at the heart of our new strategy. Please give us your views by filling in this short, four-part survey:
  • Part 1 asks multiple choice questions about you and your condition.
  • Part 2 asks open questions about what you want from research.
  • Part 3 asks you to rank different kinds of research in order of priority.
  • Part 4 asks what challenges in inherited retinal disease we should focus on.
The survey should take no more than about 15 minutes to complete. We will not be identifying any individual in the survey or sharing any personal information.
Part 1: About you
1.Are you:(Required.)
2.Please select your diagnosed condition?(Required.)
Part 2: What do you want from research and innovation?
3.What change should research aim to deliver for people with inherited retinal conditions over the next five years?(Required.)
4.What would you like to find out about inherited retinal conditions through research?(Required.)
5.How do you think research and innovation could best improve quality of life for people with inherited retinal conditions?(Required.)
Part 3: Looking to the future
6.Which kinds of research would you prioritise? Please indicate your top priority area of research by selecting 1, your second priority by selecting 2, and so on down to 7.(Required.)
1
2
3
4
5
6
7
Creating treatments – finding new ways of treating inherited retinal diseases
Studying sight loss – understanding what affects speed of sight loss to guide prognosis and care
Understanding biology – early-stage studies of genetics and biology to reveal clues for treatment
Supporting access to trials – improving clinical trials of new treatments and helping recruit patients
Improving diagnosis – speeding up diagnosis and enhancing genetic tests
Enhancing healthcare – improving patient care and helping people cope with sight loss
Technological solutions – use of new technologies such as retinal implants to help recover vision
Part 4: Multiple choice questions
7.What do you think is the most pressing concern?(Required.)
8.What type of research would you choose?(Required.)