ION-PROM: Development of a patient reported outcome measure (PROM) for inherited optic neuropathies (ION)

Dr. Patrick Yu Wai Man from the University of Cambridge and Moorfields Eye Hospital (London) is leading a study to develop a new questionnaire for individuals affected by DOA and LHON to report their quality of life and experiences living with their condition. The questionnaire will be a useful tool in future clinical trials of both conditions and as part of regular clinical assessments to understand the impact of DOA and LHON.

We are looking for individuals to participate in one-hour interviews on Zoom to discuss their experiences of living with DOA or LHON and to review the questions we have developed. We are also looking for individuals to help test the questionnaire and make sure it is relevant to the LHON and DOA communities. Individuals with a genetic diagnosis of DOA or LHON, aged 16 years and older, and with symptoms of their condition are invited to take part.

For further information, please see the attached study summary and participant information sheet

You can contact us at if you require more information or would like to register your interest.