Vitaccess and Myasthenia Gravis Foundation of America join forces to tackle real-world evidence gaps in myasthenia gravis

A new collaboration between Vitaccess and the Myasthenia Gravis Foundation of America aims to expand patient-centered real-world evidence (RWE) in myasthenia gravis (MG). The partnership links historical registry data with ongoing longitudinal research to help inform regulatory, clinical, and access-related evidence needs.

The agreement establishes the Myasthenia Gravis Foundation of America (MGFA) as the official collaborator for the Vitaccess Real MG (VRMG) Registry, a patient registry designed to collect long-term real-world data (RWD) in MG. The collaboration will bring together existing registry data and prospective data collection to support research aimed at improving understanding of disease progression, treatment use, and patient-reported outcomes.

MG is a chronic autoimmune neuromuscular disorder characterized by fluctuating muscle weakness and fatigue, often affecting the eyes, face, throat, limbs, or breathing. The variability of symptoms and disease progression has increased interest in long-term observational data to complement clinical trial findings.

The partnership aims to address limitations of traditional trial evidence, which, while providing controlled data on efficacy and safety, may not fully reflect how patients experience disease and treatment in routine care. As healthcare decision-makers place greater emphasis on longitudinal and patient-reported data, the VRMG Registry is designed to capture outcomes beyond those typically measured in clinical trials.

The registry will collect observational data on treatment patterns, symptoms, daily activities, and quality of life, linking patient-reported information with clinician-reported data and medical records. By enabling both prospective and retrospective analyses, the resulting dataset is intended to support evidence generation for regulatory decision-making, health technology assessment, and market access planning.

Mark Larkin (Chief Executive Officer and Founder, Vitaccess) said the collaboration reflects the need for evidence that complements clinical trial findings.

“There’s a gap between what clinical trials can show and what decision-makers need to see. This is particularly evident in a disease like MG… Together we will build evidence that we believe will ultimately improve outcomes for patients and caregivers living with MG.”

As part of the collaboration, MGFA will introduce its existing registry participants and broader patient and physician community to the VRMG platform. The partnership will also incorporate more than 10 years of MGFA legacy registry data into a confidential and secure repository, enabling retrospective research analyses. MGFA will have representation on the registry’s scientific advisory board to help ensure alignment with patient and clinician priorities. In addition, the collaboration is expected to support investigator-led studies through MGFA’s academic grants and facilitate clinical trial recruitment by enabling identification of potentially eligible participants through the expanded registry network.

Samantha Masterson (President and CEO, MGFA) reiterated the partnership reflects continued interest from patients in contributing to research:

“This partnership ensures that those powerful patient contributions influence groundbreaking discoveries and potential new treatments… The data our members have shared over the past decade will now inform a new wave of evidence and holds immense potential to help researchers, clinicians, and pharmaceutical companies understand MG in ways that were not possible in the past.”