21706. DISEÑO Y VALIDACIÓN PRELIMINAR DE UNA MEDIDA DE RESULTADO CLÍNICO PARA PACIENTES ADOLESCENTES Y ADULTOS CON AME. ESTUDIO SMA-LIFE ML43472 by Vázquez Costa, J., Sotoca Fernández, J., Sotoca Fernández, M., Rojas Marcos, I., Rebollo, P., Rafels Ybern, A., Cattinari, M., Martínez Moreno, M., García López, S., Terrancle, Á., Cabello Moruno, R., Povedano Panades, M.

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134P Beyond the “walker” label: functional diversity and disease impact in spinal muscular atrophy patients with walking ability by Cattinari, M., Hervás, D., de Lemus, M., Tizzano, E.

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193P Use of European rare disease registries to describe the natural history and disease progression of spinal muscular atrophy (SMA) over time by Lee, S., Deltour, N., Garry, E., Ferreras, A., Jacquot, E., McElwee, S., Sajedian, R., Kurteva, S., Boin, E., Poll, A., Davies, R., Walter, M., Jagut, M., Haberlová, J., Cattinari, M., Marini-Bettolo, C., Ekström, A., Belmonte, M. de Lemus, Breen, K., Servais, L.

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Physical fatigue and perceived fatigability in adolescents and adults with spinal muscular atrophy: A pilot study by Domine, M.C., Cattinari, M.G., de Lemus, M., Castellano, I.P., Ñungo-Garzón, N.C., Sevilla-Mantecón, T., Vázquez-Costa, J.F.

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VP.55 Fatigue, pain, breathing, voice, fatigability, sleep, rest and vulnerability as meaningful outcomes in SMA care: the patients´ and caregivers' voice by Povedano, M., Vázquez-Costa, J., Pitarch, I., López-Lobato, M., Medina, J., Fernández-Ramos, J., Lafuente-Hidalgo, M., Rojas-García, R., Caballero-Caballero, J., Málaga, I., Eirís, J., De Lemus, M., Cattinari, M., Madruga-Garrido, M., Branas, M., Cabello-Moruno, R., Díaz-Abós, P., Terrancle, A., Maurino, J., Rebollo, P.

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POSC355 Measuring the Experience of Living with Spinal Muscular Atrophy: The Role of the SMA Independence Scale by Vazquez, JF, brañas Pampillon, M, Pitarch, I, Lopez, M, Medina, J, Povedano, M, Fernandez Ramos, JA, García, MC, Rojas Garcia, R, Pascual, SI, Málaga, I, Eiris, J, De Lemus, M, Cattinari, MG, Cabello, R, Diaz, P, Terrancle, M, Maurino, J, Rebollo, P, Madruga, M

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Validation of a Set of Instruments to Assess Patient- and Caregiver-Oriented Measurements in Spinal Muscular Atrophy: Results of the SMA-TOOL Study by Vázquez-Costa, Juan F., Branas-Pampillón, María, Medina-Cantillo, Julita, Povedano, Mónica, Pitarch-Castellano, Inmaculada, López-Lobato, Mercedes, Fernández-Ramos, Joaquín A., Lafuente-Hidalgo, Miguel, Rojas-García, Ricard, Caballero-Caballero, José M., Málaga, Ignacio, Eirís-Puñal, Jesús, De Lemus, Mencía, Cattinari, María G., Cabello-Moruno, Rosana, Díaz-Abós, Paola, Sánchez-Menéndez, Victoria, Rebollo, Pablo, Maurino, Jorge, Madruga-Garrido, Marcos

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Consenso Delphi de las recomendaciones para el tratamiento de los pacientes con atrofia muscular espinal en España (consenso RET-AME) by Pitarch Castellano, I., Cabrera-Serrano, M., Calvo Medina, R., Cattinari, M.G., Espinosa García, S., Fernández-Ramos, J.A., García Campos, O., Gómez-Andrés, D., Grimalt Calatayud, M.A., Gutiérrez Martínez, A.J., Ibáñez Albert, E., Kapetanovic García, S., Madruga-Garrido, M., Martínez-Moreno, M., Medina Cantillo, J., Melián Suárez, A.I., Moreno Escribano, A., Munell, F., Nascimento Osorio, A., Pascual-Pascual, S.I., Povedano, M., Santana Casiano, I.M., Vázquez-Costa, J.F.

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