What is this study about?

We’d love to better understand the experiences people with Leber’s hereditary optic neuropathy (LHON) have when getting a diagnosis.

This research will talk to a range of people diagnosed with LHON to capture their stories.

Where will the study take place and who is responsible?

In person at the respondent’s home, or virtually if preferred.

boxee group are responsible for conducting this market research on behalf of a commissioning pharmaceutical company which will be revealed at the end of the research.

Who can take part?

Anyone diagnosed with LHON who was not aware of a family history of LHON. Ideally looking for more recent diagnosis stories i.e. within the past 10 years.

This can be the person diagnosed with LHON and if there is a family member or friend who has been involved with the journey to diagnosis they can take part in the same interview too.

What is involved in taking part?

Task 1: a 15-minute pre-task, recording yourself describing your diagnosis journey.

Task 2: a 120-minute interview in your home, or virtually, with or without a family member/friend who has been involved in your journey.

Task 3: a 15-minute follow-up call to ask you for any final details, and your feedback.

Are there any risks?

No risks.

Are there any benefits to taking part?

You will be provided with a summary of learnings.

You/family member/friend will also be reimbursed up to £330 for your time.

You will help shape activities aimed at improving the time to diagnosis for future generations.

How do I find out more?

Email: [email protected]

Call: +44 (0) 208 004 7912

Please reference: LRQ3913 LHON

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