MGFA is proud to announce the next stage in the evolution of the MG Patient Registry: the Vitaccess Real MG Registry, a new global platform designed to make participation easier, data collection more meaningful, and research more impactful.
Developed by the real-world evidence company Vitaccess in partnership with MGFA, the Vitaccess Real MG Registry captures both patient-reported experiences and clinical information to build a more complete picture of life with myasthenia gravis. The result is a secure, simple-to-use registry built around the voices of those living with MG, ensuring their experiences directly shape future research and treatment advances.
By participating, people diagnosed with MG can contribute directly to advancing knowledge, improving care, and accelerating research toward better treatments and, potentially, a cure.
What is a Patient Registry?
A patient registry is a confidential, secure database that collects health information directly from individuals living with a specific condition. Registries help capture “real-world” insights: information about day-to-day symptoms, treatment responses, and quality of life.
Registries complement data gathered during clinical trials, providing a fuller picture of treatment efficacy and life with a disease like MG.
“Clinical trials are essential, but they can’t always capture the day-to-day realities of people living with myasthenia gravis,” says Dr. Zabeen Mahuwala of the University of Kentucky Healthcare and member of the registry’s Scientific Advisory Board. “That’s why long-term, real-world research is becoming increasingly important. The Vitaccess Real MG Registry… bridges the medical data observed by clinicians with the lived experiences and reported symptoms of patients.”
As Vitaccess Founder and CEO Mark Larkin, PhD, explains, treatment-related clinical trials are designed to test potential products for regulatory approval.
“Once products are approved – and happily there have been a few approvals recently in myasthenia – there are still questions about how they work outside of a trial setting,” Larkin says.
That’s where the Real MG Registry comes in. It collects real-world data directly from people living with MG, helping researchers understand how the disease and its treatments truly affect their day-to-day experiences.
“The platform enables patients to provide data more frequently, during their everyday life,” says Larkin. “That helps build a really detailed picture of how the disease is progressing and how treatments are working.”
Bringing the Patient Voice to the Forefront
The new registry combines patient-reported outcomes with electronic medical record data, offering both a lived and a clinical perspective. That pairing, according to Larkin, is “the golden combination” for understanding MG in a comprehensive way.
“Myasthenia gravis affects a range of aspects of people’s everyday life, which is called ‘activities of daily living,’ or ADL. To understand ADL, you ask patients. Those standardized, patient-reported data are incredibly valuable.”
Registry participants answer short, regular surveys about their symptoms, energy levels, and quality of life. They can access the registry from any connected device – smartphone, tablet, or computer – and surveys take just a few minutes. The system can send text or email reminders and provides small stipends (Amazon gift cards) as a thank-you for participation.
Danielle Marchhart, an MGFA volunteer, was an early participant in the Real MG Registry.
“It was easy to sign up, and I had help every step of the way. I love that they are looking at the correlation between our medical records and the symptoms we are experiencing. Filling out the surveys is really easy and quick!”
A Registry Designed for Patients, with Patients
Vitaccess developed the Real MG Registry with direct input from the MG community and in collaboration with the MGFA. This partnership ensures the registry reflects the priorities of patients, caregivers, and clinicians alike.
“MGFA is a really impressive organization,” Larkin said. “Samm and her team have been great partners – really diligent and focused on advancing the interests of patients. This is a collaborative effort, and we believe it’s going to create a valuable research resource that benefits both researchers and the MG community.”
That collaboration will also include opportunities for participants to hear about the results of the research their data makes possible.
“Patients tell us, ‘We’re happy to be involved in research, but tell us what you’ve found out,’” Larkin noted. “We’ll be communicating back through webinars and updates so people can see how their participation helps advance understanding and, hopefully, improves care.”
Inclusive, Secure, and Global
The Vitacess Real MG Registry is open to adults with any form of myasthenia gravis. In the U.S., patients can self-refer (meaning no physician referral is needed) while participants in the U.K. and other regions may also join through partnering clinical sites. The registry is HIPAA- and GDPR-compliant, ensuring that all shared data remain secure and anonymous.
As Larkin explained, “We want as many voices as possible from all sorts of different backgrounds and locations. If you’re trying to find out what happens in the real world, you want as broad a cross-section as possible.”
Professor Saiju Jacob of University Hospitals Birmingham, a member of Vitaccess’ Scientific Advisory Board, agreed.
“Together, we are building a richer understanding of the patient journey and ensuring that the voice of the MG community is central to research and care,” he said.
Join the Effort to Advance MG Research
Every person who joins the Vitaccess Real MG Registry adds to the collective knowledge that drives discovery and change.
“This is not just about data; it’s about partnership,” Larkin emphasized. Patients contribute, researchers learn more, and that knowledge is shared back with the community.
If you are diagnosed with myasthenia gravis, consider joining the registry and adding your voice to this vital research effort. Together, we can advance understanding, improve care, and bring the MG community closer to a cure.
Visit the Vitaccess Real MG Registry to learn more and register today.