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Your Voice Matters!

We want to hear about your experience living with ADOA for this important quality-of-life online survey.

Dr. Benson Chen

Dr. Benson Chen, a neuro-ophthalmologist from Cambridge University has created a quality of life survey for people who have vision impairment due to Leber Hereditary Optic Neuropathy (LHON) and Dominant Optic Atrophy (DOA)/ OPA1 to report their experiences and quality of life.

We are reaching out to our ADOA community to participate in this 15-20 minute online survey to better understand the impact it has on your day-to-day activities and overall quality of life.

ADOA is the same condition as DOA (the extra "A" stands for autosomal, which means it is inherited). 

Click the button below to participate in the Patient Reported Outcome Measure (PROM) survey. All responses need to be submitted by April 30, 2024, to participate.

Dr. Chen's team hopes to use the questionnaire as part of clinical trials and routine clinical care. Although the questionnaire was developed with the help of people living in the United Kingdom, they are extending it internationally to people with LHON and DOA. 

There are three parts to the questionnaire, which can be completed online:

  1. First section - collects some basic demographic data - you can complete the survey without knowing your genetic mutation or visual acuity, but having both information would be very helpful in performing analysis

  2. Second section - the actual quality of life survey itself 

  3. Third section - a short questionnaire checking the relevance, appropriateness, and acceptability of the survey

The survey takes about 15-20 minutes to complete online and ends on April 30th, 2024. If you have any specific feedback, please contact

Thank you for sharing your experience for this important cause!


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