Biopharmaceutical company UCB recently shared findings from a mixed-methods study examining the experiences and unmet needs of people living with ocular myasthenia gravis (oMG). The findings were presented at the 2026 American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) Annual Meeting and Myasthenia Gravis Foundation of America (MGFA) Scientific Session.
Anna Kole, Global Patient Engagement Lead for Myasthenia Gravis at UCB, discusses the findings and explains how patient perspectives could improve clinical research and care.
Understanding Ocular Myasthenia Gravis and Its Impacts on Daily Life
oMG is a rare neuromuscular disease and a specialized form of myasthenia gravis. oMG affects the muscles that control eye movements and eyelid function and occurs in 15%- 50% of cases. The most common symptoms of oMG are diplopia and ptosis. However, patients may also experience additional symptoms, including eye pain, eye strain, blurred vision, light sensitivity, and fatigue.
Ms. Kole noted that patients with oMG often experience some or all of these symptoms throughout the day, which can make it challenging to perform routine activities, such as driving, reading, and using digital devices.
The study incorporated input from a global patient council consisting of 10 experienced patient organization leaders representing 10 countries. The mixed-methods research included an online questionnaire as well as a semi-structured focus group.
Ms. Kole said that although many people consider oMG a “mild” form of the disease, it can have wide-ranging impacts on quality of life. In fact, the patient council highlighted how oMG can contribute to social isolation, embarrassment, anxiety, and even emotional distress.
Study Uncovers Diagnostic Challenges and Unmet Needs
In addition to the study findings, Ms. Kole shared that the global patient council identified several barriers that can delay oMG diagnosis and limit access to specialized care. These barriers include:
Fluctuating Symptoms
oMG symptoms often fluctuate throughout the day. This unpredictability can make diagnosis challenging, especially when symptoms aren’t visible during a medical examination.
Limited Awareness
Not all medical professionals are familiar with myasthenia gravis or oMG, so they may not recognize common warning signs. This lack of awareness is particularly acute in rural areas, where specialists and specialized care can be hard to come by.
Overlapping Symptoms
oMG presents similar symptoms to other conditions, such as multiple sclerosis (MS), stroke, and thyroid eye disease (TED). As a result, some patients receive an incorrect diagnosis, delaying access to appropriate care.
The patient council also looked at participants’ treatment preferences. Patients reported an interest in steroid-sparing therapies and improved symptom control. They also said they preferred approaches that could prevent oMG from progressing to generalized myasthenia gravis (MG).
How Patient Perspectives Improve Clinical Research
Ms. Kole also explained the importance of including oMG patients in the trial development process. Specifically, she emphasized how patient perspectives can:
Make Trials More Accessible
People with oMG often have visual limitations, such as blurred or double vision. Ms. Kole shared that trial designers should take these challenges into account when creating recruitment materials and trial protocols. She also highlighted examples of these accommodations, such as flexible breaks and accessible text.
Result In More Meaningful Research Outcomes
Patient perspectives make it easier to select meaningful clinical endpoints that capture the full range of oMG symptoms. They can also make it easier to define secondary endpoints, like quality-of-life improvements.
Support New Treatments
Ms. Kole discussed the potential benefits of developing more targeted therapies for MG. She said current treatments often involve nonspecific approaches that can cause adverse effects with long-term use. More targeted treatments could improve disease management and patients’ ability to participate in everyday activities.
In Their Own Words
“Ocular myasthenia gravis does not mean a minor form of MG. Can you imagine what your life would be like if you weren’t able to reliably drive or use your computer or walk on the sidewalk, safely and independently?” – Anna Kole, Global Patient Engagement Lead
For more information, visit: https://www.prnewswire.com/news-releases/ucb-data-presented-at-2026-aanem-annual-meeting-and-mgfa-scientific-session-underscore-leadership-in-advancing-targeted-treatments-for-gmg-302890588.html
To learn more about ocular myasthenia gravis and other rare eye diseases, visit: https://checkrare.com/diseases/ophthalmology-eye-diseases/