How does OPA1-related optic atrophy (ADOA) progress over a longer period? And which research methods can help evaluate treatments in the future? The eye clinic at the LMU Klinikum in Munich is conducting the OPA-LONG study out to find out.
With this study, the researchers aim to map out exactly how ADOA develops over several years. In addition, they are looking for a reliable 'measuring stick': which eye tests will show fastest and clearest whether a new medication or treatment is truly effective?
Research methods
In addition to standard eye examinations (such as the eye test, the eye scan/OCT, the visual field test, and testing of color and contrast vision), the study uses two innovative techniques:
- Video oculography (with the BulbiCAM): measures eye movements very precisely.
- Flavoprotein fluorescence imaging (with the OcuMet Beacon): examines metabolism and energy supply in the cells of the retina.
Who can participate?
- Persons aged 6 years and older
- With a molecularly and genetically established OPA1 gene mutation
- With the written consent of the participant (or parent/guardian in the case of minors)
Practical information
- The examination takes approximately 6 hours and, in principle, takes place once a year.
- Participation is entirely voluntary and can be terminated at any time.
- There is no financial compensation.
- You can participate regardless of where you live in Germany, and participation is not tied to a specific health insurer.
- Do you live outside Germany? Please feel free to contact the study team directly to ask if participation is possible in your situation.
How do I contact you?
Do you have questions about the study or would you like to sign up directly? Please feel free to contact the study team via the email addresses below:
- Sarah Marxsen (PhD student & study coordinator): sarah.marxsen@med.uni-muenchen.de
- Dr. med. Maximilian Gerhardt (principal investigator): maximilian.gerhardt@med.uni-muenchen.de
The study is officially registered with ClinicalTrials.gov under number NCT07729982.
As the Cure ADOA Foundation, we share this information to reach as many people with OPA1-ADOA as possible. After all, with a rare condition, it is very important that those involved are aware of ongoing research, so that they can decide for themselves whether participation is right for them.
Are you affected by the condition yourself, or do you know someone with a diagnosed OPA1 mutation? Feel free to share this information within your network.
