From uncertainty to clarity: ZS and UCB partner to accelerate myasthenia gravis diagnoses

Your health seems fine until one day you begin experiencing eyelid droopiness. In the months and years to come, you encounter additional symptoms ranging from slurred speech to chronic fatigue. You see your doctor and a few specialists, but answers—and an effective treatment—remain elusive. This is the frustrating reality for patients suffering from myasthenia gravis (MG). ZS and UCB wanted to challenge the status quo and help patients accelerate their path to diagnosis. 

MG is a rare, chronic autoimmune disorder involving nerves and muscles. It is characterized by subtle, often indistinguishable symptoms that frequently lead to misdiagnosis.

Because MG isn’t always top of mind for some practitioners, nearly 20% of patients receive an initial incorrect diagnosis. ZS analysis found that many MG patients typically consult seven to 10 specialists and can face diagnostic delays of up to four years before being diagnosed with MG.

UCB was experienced in reaching patients after a diagnosis but wanted to do more to help people who were suffering from MG’s challenging and perplexing symptoms. The company partnered with ZS to pursue a new approach to reach potential MG patients and accelerate their path to diagnosis. 

Patients experiencing unclear symptoms are often highly engaged and active in their diagnostic journey yet struggle to find the right answers—and this is especially true for a rare disease like MG. To address this challenge, ZS proposed a direct-to-patient approach, making it easier for individuals experiencing MG symptoms to receive a diagnosis and begin treatment. ZS collaborated with UCB to develop and refine this approach into what is now known as ZEBRA.

ZEBRA follows a four-step process to facilitate and accelerate the path to diagnosis:

• Step 1: The potential patient population engages with social media ads that spotlight top-of-mind symptoms.
• Step 2: Patients who view the ads are invited to participate in a research study and complete an evidence-based self-assessment, and a subset of them are invited to provide informed consent for the sharing of their electronic health record (EHR) data.
• Step 3: A board-certified physician reviews the assessment before issuing a report to the patient that details whether the physician believes the patient has a high, medium or low likelihood of having MG. In addition to the report, patients receive a list of specialists nearby.
• Step 4: Patients can take the physician’s report to a specialist who reviews it, along with the patient’s medical records and history, to potentially diagnose MG.

Colin Lake, head of digital business transformation of neurology at UCB, said he viewed the project as a calculated opportunity, because the approach was novel, and success wasn’t guaranteed. He noted that to address the needs of patients experiencing symptoms of a disease, a pharma company would typically conduct market research, find gaps, develop, design and implement interventions—all of which takes a lot of time. This process can also create a false sense of accuracy based on what patients say during research. Both ZS and UCB wanted to execute an alternative, innovative strategy rooted in a lean start-up approach, making their partnership a natural fit.

“We found ZS was the right partner for this exciting new approach,” Lake said. “Their willingness to invest resources showed me that they believed this innovative approach would be successful. This wasn’t a standard client-vendor relationship—ZS was a true collaborator.”

UCB and ZS agreed on the project’s most significant challenge: Ensuring patients and neurologists viewed the self-assessment and report as clinically legitimate tools, as designed and intended by their collaboration. ZS worked with Pritikanta Paul, M.D., a neurologist at the University of San Francisco, California, to design the evidence-based assessment in close partnership with ZS’s Vishnu Pandurangadu, M.D. They also sought input from other neuromuscular specialists to help ensure the self-assessment and resulting report were taken seriously by patients and doctors alike.

ZS and UCB were careful to ensure the report wouldn’t blindside doctors or add to their burden but instead be a helpful aid that patients could use to advocate for themselves, and neurologists would find useful. They also paid special attention to collecting the right data while ensuring transparency and adhering to data privacy and HIPAA regulations that protect patients' privacy.

“The materials needed to be disease-focused—not treatment-focused—and working with the University of San Francisco, California, on this project offered us credibility,” Lake said. “Everyone involved had a genuine interest in helping the people who completed the self-assessment. If the doctor reviewing the self-assessment didn’t think a patient had MG, they would note that in the report.”

ZS designed and published the ads on social media, which Lake described as “warm and welcoming.” But the ads weren’t the only way patients found out about the self-assessment— patients who completed it would often share information about it with others on online platforms such as Reddit.

“In addition to the ads, the self-assessment marketed itself through word of mouth,” Lake said. “Someone would see an ad and complete the self-assessment and then post about the assessment in relevant groups on social media platforms. We pretty quickly exceeded our goals for reaching potential patients.” 

It took just six months after an initial brainstorm for ZS and UCB to build and launch the ads and self-assessment, a feat Lake called unprecedented in its speed.

“We of course knew about ZS’s rare disease and tech expertise, but I was struck by their ability to design, develop and help us rapidly go to market,” he said.

The team quickly achieved results. Within the first 10 weeks of launching the solution, it generated conversions at a rate 10 times higher than a traditional direct-to-consumer marketing campaign. “For valid reasons, pharma and industry regulators haven’t fully accounted for the marketing opportunities offered by social media,” Lake said. “But this initiative confirmed for me that social media could be one of the best avenues for targeting patients in some circumstances.”

In the initial months after the ads were published, 140 people completed the assessment and many of these individuals were identified as “highly likely” to have the disease. Sixty-six of them reported they visited a doctor and 20 said they received a MG diagnosis; another 15 people who completed the assessment said they planned to visit a doctor. Of the 140 patients who completed the assessment, 51 agreed to share their full longitudinal EHR data, offering another window into their health that will help with research of MG diagnosis journeys.

“Our 2025 ZS Future of Health Report shined a light on just how busy doctors are in countries around the world,” said ZS Principal Vijesh Unnikrishnan, the ZS leader for this novel initiative. “Too often, rare disease symptoms are confused with more common conditions, leading patients on a yearslong search for answers. I’m proud ZS and UCB were able to leverage our ZEBRA solution to close care gaps and help patients accelerate their path to diagnosis, treatment and hopefully relief.”

What’s next? ZS and UCB want to continue to push the envelope. They are exploring how to scale ZEBRA to reach more potential MG patients and support them beyond diagnosis and into treatment and disease management. The firms are also interested in mediating cross-industry partnerships for rare disease-focused pharma companies, patient advocacy groups and others to create multi-party consortia models to drive scale for such innovations and support more rare diseases.

Lake said UCB and ZS have discussed how the ZEBRA-driven solution can be utilized to support patients in other disease areas, including those that require genetic testing to confirm diagnosis. For UCB specifically, Lake hopes his company can partner with other pharma companies to help rare disease patients receive optimal care faster through digital and evidence-based solutions.