Presentation (CTI)

OBJECTIVES: Real-world registries often employ different recruitment pathways to maximise scale, reach, and representativeness. While this approach strengthens evidence breadth, it could introduce variation affecting interpretation of registry-derived evidence. This study explored differences in participant profiles between the Vitaccess Real Myasthenia Gravis (VRMG) registry’s recruitment pathways and considers implications for evidence use.
METHODS: The VRMG registry recruits participants via two pathways: site-based and direct-to-patient supported by patient advocacy groups and community neurologists. Site participants provide data through clinician-reported electronic case report forms at 6-month intervals. In parallel, direct-to-patient participants contribute clinical data monthly through electronic medical record aggregation. All participants complete baseline demographic and monthly patient reported outcomes questionnaires. Participant characteristics were summarised descriptively by recruitment pathway. Mixed Models for Repeated Measures analysed differences in monthly Myasthenia Gravis Activities of Daily Living (MG-ADL) scores over 12 months, adjusting for age, sex, recruitment pathway and timescale.
RESULTS: As of June 2026, the registry included 183 respondents: 42.08% site-recruited and 57.92% direct-to-patient. Site-recruited participants were slightly younger (mean [SD] baseline age = 60.51 [16.06] vs 63.05 [11.93]) and more often female (53.25% vs 42.45%). Direct-to-patient participants had a higher mean and lower variability in myasthenia gravis diagnosis age (Mean [SD] = 58.02 [12.36] vs 52.82 [18.73]), but similar medians (59.69 vs 57.28). Mean (SD) MG-ADL scores at baseline were 5.32 (3.76) overall, 4.54 (3.39) in site-recruited and 5.86 (3.92) in direct-to-patient participants. Adjusted mean MG-ADL scores over 12 months were 0.44 lower in site-recruited compared to direct-to-patient participants (p=0.03), indicating a consistent average difference in patient-reported disease burden across recruitment pathways.
CONCLUSIONS: Direct-to-patient participants reported slightly greater MG-ADL scores. Recruitment pathways in multimodal registries may capture groups of patients with different profiles. Recruitment pathways may not always have interchangeable sources for real world evidence; thoughtful, pathway-aware harmonisation and analysis are important in longitudinal registry-based evidence generation.