Multiple sclerosis and related disorders · 2026
Building sustainable multiple sclerosis registries in Latin America: A practical framework for real-world evidence generation and healthcare access.
СтатьяОбзорНазвание и аннотация: Перевод в очереди
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Rojas Juan I, Patrucco Liliana, Cristiano Edgardo, Becker Jefferson, Giunta Diego H
Аннотация
UNLABELLED: Real-world evidence (RWE) plays an increasingly important role in multiple sclerosis (MS) and related disorders, complementing randomized clinical trials by capturing effectiveness, safety, treatment persistence, and access patterns in routine care. In Latin America (LATAM), fragmented healthcare systems and structural inequities in access to diagnosis, magnetic resonance imaging (MRI), biomarkers, and high-cost therapies underscore the need for regionally applicable real-world data.
OBJECTIVES: To provide a practical methodological framework for the design, implementation, and sustainability of clinical registries in LATAM, drawing on regional experience in MS and neuromyelitis optica spectrum disorder (NMOSD).
DESIGN/APPROACH: Narrative review integrating methodological principles for registry development with lessons learned from the implementation of multicenter MS registries in LATAM. Key domains analyzed include definition of objectives, core dataset selection, representativeness, bias mitigation, governance, data quality assurance, ethical considerations, and sustainability strategies.
RESULTS: Clinical registries, when based on clearly defined objectives and essential minimum variables, enable standardized longitudinal data collection in routine practice. Regional experience highlights recurrent challenges, including selection bias toward high-complexity centers, missing data, operational burden, and governance conflicts. Pragmatic strategies-such as core datasets, progressive center inclusion, predefined authorship rules, and early dissemination of results-improve feasibility and long-term sustainability. Registries also provide actionable evidence on diagnostic timelines, treatment initiation, persistence, and access disparities, supporting clinical, regulatory, and health technology assessment decisions.
CONCLUSIONS: Well-designed clinical registries represent a strategic platform for generating high-quality RWE in MS and related disorders in LATAM. By combining methodological rigor with operational pragmatism, registries can quantify healthcare gaps, enhance regional collaboration, and contribute to more equitable and evidence-informed decision-making.
OBJECTIVES: To provide a practical methodological framework for the design, implementation, and sustainability of clinical registries in LATAM, drawing on regional experience in MS and neuromyelitis optica spectrum disorder (NMOSD).
DESIGN/APPROACH: Narrative review integrating methodological principles for registry development with lessons learned from the implementation of multicenter MS registries in LATAM. Key domains analyzed include definition of objectives, core dataset selection, representativeness, bias mitigation, governance, data quality assurance, ethical considerations, and sustainability strategies.
RESULTS: Clinical registries, when based on clearly defined objectives and essential minimum variables, enable standardized longitudinal data collection in routine practice. Regional experience highlights recurrent challenges, including selection bias toward high-complexity centers, missing data, operational burden, and governance conflicts. Pragmatic strategies-such as core datasets, progressive center inclusion, predefined authorship rules, and early dissemination of results-improve feasibility and long-term sustainability. Registries also provide actionable evidence on diagnostic timelines, treatment initiation, persistence, and access disparities, supporting clinical, regulatory, and health technology assessment decisions.
CONCLUSIONS: Well-designed clinical registries represent a strategic platform for generating high-quality RWE in MS and related disorders in LATAM. By combining methodological rigor with operational pragmatism, registries can quantify healthcare gaps, enhance regional collaboration, and contribute to more equitable and evidence-informed decision-making.