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UK trials and research studies

ORION study: Outcomes Research in Inherited Optic Neuropathies

The aim of this study is to understand how an inherited optic neuropathy progresses over a certain time period.

What is this study about?

The aim of this study is to understand how an inherited optic neuropathy progresses over a certain time period. We plan to achieve this by assessing a number of visual parameters and analysing how these may change over three years.

Where will the study take place and who is responsible?

This study is led by Professor Patrick Yu-Wai-Man, an eye specialist who carries out research into inherited optic neuropathies at the University of Cambridge and Addenbrooke’s Hospital. Study visits will take place at the Cambridge Clinical Vision Laboratory located at the Cambridge Clinical Research Facility, Addenbrooke’s Hospital.

Who can take part?

Individuals with a genetic diagnosis of an inherited optic neuropathy, aged 16 years or older, ideally with vision loss duration of 10 years or less.

What is involved in taking part?

As a participant in this study, you will be asked to attend up to six research study visits at the Cambridge Clinical Vision Laboratory. There will be visits annually, and two optional visits at 6 months and 18 months. During the first visit we will have a discussion about your diagnosis, including a medical history, and a brief examination. We will also perform a number of visual assessments at each visit.

Are there any risks?

Participation in this study involves minimal risks, however some tests and procedures are occasionally associated with side effects:

  • Taking blood is a routine clinical test that may cause some bleeding, bruising or discomfort. Some individuals may be prone to fainting. All blood samples will be collected by appropriately trained members of staff.
  • Some ocular assessments require the use of pupil-dilating eye drops, which have been associated with acute angle-closure glaucoma. Again, this is a very rare complication (0.03%) occurring predominately in patients with a shallow anterior eye chamber. You will undergo an examination before the eye drops are administered to identify whether you have a shallow eye chamber which may predispose to angle-closure glaucoma.
  • Eye drops to dilate the pupils will cause blurred vision that typically lasts a few hours – vision will return to normal after this. You should attend with somebody to help you travel home safely after the study visit.
  • The OcuMet Beacon is a new camera that measures mitochondrial function in the back of the eyes (the fundus). It emits a bright blue light and takes a special photograph of the eyes. The blue light can feel very bright like a camera flash and might cause vision to be blurred. This typically lasts no longer than 10 minutes and does not harm your eyes. The OcuMet Beacon has not been approved by UK Regulatory Authorities and is currently only for research purposes, including in this study.

Are there any benefits to taking part?

There is no guarantee that you will benefit directly from taking part in this study. However, your participation in this study will enable doctors to gain a better understanding of the way inherited optic neuropathies progress over time. In turn, this information can be used in future research to aid clinical trials investigating a curative therapy for inherited optic neuropathies.

How do I find out more?

If you think you might be eligible and are interested in taking part in this research, or would like any further information, please contact the study team directly:

Email: [email protected]

Tel: 01223 331506