We were recently asked again by Dr. Patrick Yu Wai Man's team to draw attention to the message below. If you would like to complete the questionnaire, please do so before April 30, 2024.
ION-PROM study: Development of a Patient Reported Measurement Instrument (PROM) for Hereditary Optic Neuropathies (ION) The questionnaire is open to anyone with a genetic diagnosis of DOA and focuses primarily on the visual impact. We will collect some basic data, including eyesight.
Professor Patrick Yu Wai Man from the University of Cambridge and Moorfields Eye Hospital (London) is leading a study to develop a new questionnaire for people affected by autosomal dominant optic atrophy (ADOA) and Leber hereditary optic neuropathy (LHON) to assess their quality of life and experiences with their condition.
Although the questionnaire was originally developed with a UK population in mind, we are interested to see how participants in the UK respond compared to people elsewhere in the world. Depending on the feedback we receive, we will consider launching a second phase of research to update and validate the questionnaire for a non-UK population, including translations into other languages (subject to content).
This means that the researchers want to evaluate whether the questionnaire is also relevant and applicable to people outside the United Kingdom. If the feedback is positive and there appears to be interest from other parts of the world, they may decide to expand the research to other countries and cultures. This could potentially lead to an international version of the questionnaire, translated into different languages, to reach a broader population and make comparisons between different groups of people with hereditary optic neuropathies.
The draft questionnaire is still in English and ready to be tested.
You can complete the questionnaire online: https://www.redcap-ide-cam.org.uk/surveys/?s=PAJWHNL9JPX3FYYH
If you fill it out on your phone or tablet, there are accessibility features built into the top right corner that you can use. The questionnaire is completely anonymous and takes about 30 minutes to complete, including some standard questions about the mutation you carry and your eyesight.
If you have any questions about the questionnaire or how to complete it, please contact the MitoCAMB research team: add-tr.mitoteam@nhs.net
The results of the questionnaire will be analyzed and shared in the coming months. Professor Yu Wai Man and his team greatly appreciate your support.
