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1. Electrodiagnosis of Guillain-Barre syndrome in the International GBS Outcome Study: Differences in methods and reference values

Author

Addington, J.M., Ajroud-Driss, S., Andersen, H., Antonini, G., Attarian, S., Badrising, U.A., Balloy, G., Barroso, F.A., Bateman, K., Bella, I.R., Benedetti, L., van den Bergh, P., Bertorini, T.E., Bhavaraju-Sanka, R., Bianco, M., Brannagan, T.H., Briani, C., Buerrmann, Busby, M., Butterworth, S., Casasnovas, C., Cavaletti, G., Chao, C.C., Chavada, G., Chen, S., Claeys, K.G., Conti, M.E., Cornblath, D.R., Cosgrove, J.S., Dalakas, M.C., van Damme, P., Dardiotis, E., Davidson, A., Derejko, M.A., van Dijk, G.W., Dimachkie, M.M., van Doorn, P.A., Dornonville de la Cour, C., Echaniz-Laguna, A., Eftimov, F., Faber, C.G., Fazio, R., Feasby, T.E., Fokke, C., Fujioka, T., Fulgenzi, E.A., Galassi, G., Garcia-Sobrino, T., Garssen, M.P.J., Gijsbers, C.J., Gilchrist, J.M., Gilhuis, H.J., Goldstein, J.M., Gorson, K.C., Goyal, N.A., Granit, V., Grisanti, S.T.E., Gutiérrez-Gutiérrez, Gutmann, L., Hadden, R.D.M., Harbo, T., Hartung, H.P., Holbech, J.V., Holt, J.K.L., Hsieh, S.T., Htut, M., Hughes, R.A.C., Illa, I., Islam, B., Islam, Z., Jacobs, B.C., Fehmi, J., Jellema, K., Jerico Pascual, I., Kaida, K., Karafiath, S., Katzberg, H.D., Khoshnoodi, M.A., Kiers, L., Kimpinski, K., Kleyweg, R.P., Kokubun, N., Kolb, N.A., van Koningsveld, R., van der Kooi, A.J., Kramers, J.C.H.M., Kuitwaard, K., Kusunoki, S., Kuwabara, S., Kwan, J.Y., Ladha, S.S., Landschoff Lassen, L., Lawson, V., Lehmann, H.C., Lee Pan, E., Lunn, M.P.T., Manji, H., Marfia, G.A., Márquez Infante, C., Martin-Aguilar, L., Martinez Hernandez, E., Mataluni, G., Mattiazi, M., McDermott, C.J., Meekins, G.D., Miller, J.A.L., Mohammad, Q.D., Monges, M.S., Moris de la Tassa, G., Nascimbene, C., Navacerrada-Barrero, F.J., Nobile-Orazio, E., Nowak, R.J., Orizaola, P.J., Osei-Bonsu, M., Pardal, A.M., Pardo, J., Pascuzzi, R.M., Péréon, Y., Pulley, M.T., Querol, L., Reddel, S.W., van der Ree, T., Reisin, R.C., Rinaldi, S., Roberts, R.C., Rojas-Marcos, I., Rudnicki, Sachs, G.M., Samijn, J.P.A., Santoro, L., Schenone, A., Sedano Tous, M.J., Shahrizaila, N., Sheikh, K.A., Silvestri, N.J., Sindrup, S.H., Sommer, C.L., Stein, B., Song, Y., Stino, A.M., Tankisi, H., Tannemaat, M.R., Twydell, P., Vélez-Santamaria, P.V., Varrato, J.D., Vermeij, F.H., Visser, L.H., Vytopil, M.V., Waheed, W., Walgaard, C., Wang, Y.Z., Willison, H.J., Wirtz, P.W., Yamagishi, Y., Zhou, L., Zivkovic, S.A., Arends, Samuel, Drenthen, Judith, van den Bergh, Peter, Franssen, Hessel, Hadden, Robert D.M., Islam, Badrul, Kuwabara, Satoshi, Reisin, Ricardo C., Shahrizaila, Nortina, Amino, Hiroshi, Antonini, Giovanni, Attarian, Shahram, Balducci, Claudia, Barroso, Fabio, Bertorini, Tulio, Binda, Davide, Brannagan, Thomas H., Buermann, Jan, Casasnovas, Carlos, Cavaletti, Guido, Chao, Chi-Chao, Dimachkie, Mazen M., Fulgenzi, Ernesto A., Galassi, Giuliana, Gutiérrez Gutiérrez, Gerardo, Harbo, Thomas, Hartung, Hans-Peter, Hsieh, Sung-Tsang, Kiers, Lynette, Lehmann, Helmar C., Manganelli, Fiore, Marfia, Girolama A., Mataluni, Giorgia, Pardo, Julio, Péréon, Yann, Rajabally, Yusuf A., Santoro, Lucio, Sekiguchi, Yukari, Stein, Beth, Stettner, Mark, Uncini, Antonino, Verboon, Christine, Verhamme, Camiel, Vytopil, Michal, Waheed, Waqar, Wang, Min, Zivkovic, Sasha, Jacobs, Bart C., and Cornblath, David R.

Published
2022
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2. Clinical guide for the diagnosis and follow-up of myotonic dystrophy type 1, MD1 or Steinert's disease

Author

Gutiérrez Gutiérrez, G., Díaz-Manera, J., Almendrote, M., Azriel, S., Eulalio Bárcena, J., Cabezudo García, P., Camacho Salas, A., Casanova Rodríguez, C., Cobo, A.M., Díaz Guardiola, P., Fernández-Torrón, R., Gallano Petit, M.P., García Pavía, P., Gómez Gallego, M., Gutiérrez Martínez, A.J., Jericó, I., Kapetanovic García, S., López de Munaín Arregui, A., Martorell, L., Morís de la Tassa, G., Moreno Zabaleta, R., Muñoz-Blanco, J.L., Olivar Roldán, J., Pascual Pascual, S.I., Peinado Peinado, R., Pérez, H., Poza Aldea, J.J., Rabasa, M., Ramos, A., Rosado Bartolomé, A., Rubio Pérez, M.Á., Urtizberea, J.A., Zapata-Wainberg, G., and Gutiérrez-Rivas, E.

Published
2020
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3. Guía clínica para el diagnóstico y seguimiento de la distrofia miotónica tipo 1, DM1 o enfermedad de Steinert

Author

Gutiérrez Gutiérrez, G., Díaz-Manera, J., Almendrote, M., Azriel, S., Eulalio Bárcena, J., Cabezudo García, P., Camacho Salas, A., Casanova Rodríguez, C., Cobo, A.M., Díaz Guardiola, P., Fernández-Torrón, R., Gallano Petit, M.P., García Pavía, P., Gómez Gallego, M., Gutiérrez Martínez, A.J., Jericó, I., Kapetanovic García, S., López de Munaín Arregui, A., Martorell, L., Morís de la Tassa, G., Moreno Zabaleta, R., Muñoz-Blanco, J.L., Olivar Roldán, J., Pascual Pascual, S.I., Peinado Peinado, R., Pérez, H., Poza Aldea, J.J., Rabasa, M., Ramos, A., Rosado Bartolomé, A., Rubio Pérez, M.Á., Urtizberea, J.A., Zapata-Wainberg, G., and Gutiérrez-Rivas, E.

Published
2020
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6. 20666. MIASTENIA-MIOSITIS ASOCIADA A INHIBIDORES DE PUNTOS DE CONTROL INMUNITARIO: ANÁLISIS RETROSPECTIVO MULTICÉNTRICO EN ESPAÑA

Author

Velasco Fargas, R., Cabrera Maqueda, J., Marco Cazcarra, C., Fonseca, E., Chico García, J., Gómez Fernández, F., del Pino Tejado, L., Cabello Murgui, J., Caldú, R., Fadrique, C., Sánchez Vizcaíno, C., Hernández Tost, H., Ros, M., Gállego Pérez- Larraya, J., Jauregui Larrañaga, C., García Yepes, M., Chavarría Miranda, A., González Mingot, C., Morís de la Tassa, G., Alañá García, M., Torné Hernández, L., Macías Gómez, A., Pouso Diz, J., Besora Tavera, S., Cabezudo García, P., Izquierdo Gracia, C., Boix Lago, A., Carvajal Hernández, A., Álvarez Troncoso, J., Barón Rubio, M., Riancho, J., Simó Parra, M., and Martínez Hernández, E.

Published
2024
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9. Current treatment practice of Guillain-Barré syndrome

Author

Verboon, C, Doets, A, Galassi, G, Davidson, A, Waheed, W, Pereon, Y, Shahrizaila, N, Kusunoki, S, Lehmann, H, Harbo, T, Monges, S, Van Den Bergh, P, Willison, H, Cornblath, D, Jacobs, B, Hughes, R, Gorson, K, Hartung, H, Van Doorn, P, Van den Berg, B, Roodbol, J, Van Woerkom, M, Reisin, R, Reddel, S, Islam, Z, Islam, B, Mohammad, Q, Feasby, T, Dardiotis, E, Nobile-Orazio, E, Bateman, K, Illa, I, Querol, L, Hsieh, S, Chavada, G, Addington, J, Ajroud-Driss, S, Andersen, H, Antonini, G, Ariatti, A, Attarian, S, Badrising, U, Barroso, F, Benedetti, L, Beronio, A, Bianco, M, Binda, D, Briani, C, Bunschoten, C, Burmann, J, Bella, I, Bertorini, T, Bhavaraju-Sanka, R, Brannagan, T, Busby, M, Butterworth, S, Casasnovas, C, Cavaletti, G, Chao, C, Chen, S, Chetty, S, Claeys, K, Conti, M, Cosgrove, J, Dalakas, M, Demichelis, C, Derejko, M, Dillmann, U, Dimachkie, M, Doppler, K, Dornonville de la Cour, C, Echaniz-Laguna, A, Eftimov, F, Faber, C, Fazio, R, Fokke, C, Fujioka, T, Fulgenzi, E, Garcia-Sobrino, T, Garssen, M, Georgios, H, Gijsbers, C, Gilchrist, J, Gilhuis, J, Giorli, E, Goldstein, J, Goyal, N, Granit, V, Grapperon, A, Gutierrez, G, Hadden, R, Holbech, J, Holt, J, Pedret, C, Htut, M, Jellema, K, Pascual, I, Jimeno-Montero, M, Kaida, K, Karafiath, S, Katzberg, H, Kiers, L, Kieseier, B, Kimpinski, K, Kleyweg, R, Kokubun, N, Kolb, N, Kuitwaard, K, Kuwabara, S, Kwan, J, Ladha, S, Lassen, L, Lawson, V, Ledingham, D, Lucy, S, Lunn, M, Magot, A, Manji, H, Marchesoni, C, Marfia, G, Infante, C, Hernandez, E, Mataluni, G, Mattiazi, M, Mcdermott, C, Meekins, G, Miller, J, Moris de la Tassa, G, Physiotherapist, J, Nascimbene, C, Nowak, R, Balaguer, P, Osei-Bonsu, M, Pan, E, Pardal, A, Pardo, J, Pasnoor, M, Pulley, M, Rajabally, Y, Rinaldi, S, Ritter, C, Roberts, R, Rojas-Marcos, I, Rudnicki, S, Ruiz, M, Sachs, G, Samijn, J, Santoro, L, Savransky, A, Schenone, A, Schwindling, L, Tous, M, Sekiguchi, Y, Sheikh, K, Silvestri, N, Sindrup, S, Sommer, C, Stein, B, Stino, A, Spyropoulos, A, Srinivasan, J, Styliani, R, Suzuki, H, Tankisi, H, Tigner, D, Twydell, P, Van Damme, P, Van der Kooi, A, Van Dijk, G, Van der Ree, T, Van Koningsveld, R, Valzania, F, Varrato, J, Vermeij, F, Verschuuren, J, Visser, L, Vytopil, M, Wilken, M, Wilkerson, C, Wirtz, P, Yamagishi, Y, Zhou, L, Zivkovic, S, Verboon C., Doets A. Y., Galassi G., Davidson A., Waheed W., Pereon Y., Shahrizaila N., Kusunoki S., Lehmann H. C., Harbo T., Monges S., Van Den Bergh P., Willison H. J., Cornblath D. R., Jacobs B. C., Hughes R. A. C., Gorson K. C., Hartung H. P., Van Doorn P. A., Van den Berg B., Roodbol J., Van Woerkom M., Reisin R. C., Reddel S. W., Islam Z., Islam B., Mohammad Q. D., Feasby T. E., Dardiotis E., Nobile-Orazio E., Bateman K., Illa I., Querol L., Hsieh S. T., Chavada G., Addington J. M., Ajroud-Driss S., Andersen H., Antonini G., Ariatti A., Attarian S., Badrising U. A., Barroso F. A., Benedetti L., Beronio A., Bianco M., Binda D., Briani C., Bunschoten C., Burmann J., Bella I. R., Bertorini T. E., Bhavaraju-Sanka R., Brannagan T. H., Busby M., Butterworth S., Casasnovas C., Cavaletti G., Chao C. C., Chen S., Chetty S., Claeys K. G., Conti M. E., Cosgrove J. S., Dalakas MC., Demichelis C., Derejko M. A., Dillmann U., Dimachkie M. M., Doppler K., Dornonville de la Cour C., Echaniz-Laguna A., Eftimov F., Faber C. G., Fazio R., Fokke C., Fujioka T., Fulgenzi E. A., Garcia-Sobrino T., Garssen M. P. J., Georgios H. M., Gijsbers C. J., Gilchrist J. M., Gilhuis J., Giorli E., Goldstein J. M., Goyal N. A., Granit V., Grapperon A., Gutierrez G., Hadden R. D. M., Holbech J. V., Holt J. K. L., Pedret C. H., Htut M., Jellema K., Pascual I. J., Jimeno-Montero M. C., Kaida K., Karafiath S., Katzberg H. D., Kiers L., Kieseier B. C., Kimpinski K., Kleyweg R. P., Kokubun N., Kolb N. A., Kuitwaard K., Kuwabara S., Kwan J. Y., Ladha S. S., Lassen L. L., Lawson V., Ledingham D., Lucy S. T., Lunn M. P. T., Magot A., Manji H., Marchesoni C., Marfia G. A., Infante C. M., Hernandez E. M., Mataluni G., Mattiazi M., McDermott C. J., Meekins G. D., Miller J. A. L., Moris de la Tassa G., Physiotherapist J. M., Nascimbene C., Nowak R. J., Balaguer P. O., Osei-Bonsu M., Pan E. B. L., Pardal A. M., Pardo J., Pasnoor M., Pulley M., Rajabally Y. A., Rinaldi S., Ritter C., Roberts R. C., Rojas-Marcos I., Rudnicki S. A., Ruiz M., Sachs G. M., Samijn J. P. A., Santoro L., Savransky A., Schenone A., Schwindling L., Tous M. J. S., Sekiguchi Y., Sheikh K. A., Silvestri N. J., Sindrup S. H., Sommer C. L., Stein B., Stino A. M., Spyropoulos A., Srinivasan J., Styliani R., Suzuki H., Tankisi H., Tigner D., Twydell P., Van Damme P., Van der Kooi A. J., Van Dijk G. W., Van der Ree T., Van Koningsveld R., Valzania F., Varrato J. D., Vermeij F. H., Verschuuren J., Visser L. H., Vytopil M. V., Wilken M., Wilkerson C., Wirtz P. W., Yamagishi Y., Zhou L., Zivkovic S. A., Verboon, C, Doets, A, Galassi, G, Davidson, A, Waheed, W, Pereon, Y, Shahrizaila, N, Kusunoki, S, Lehmann, H, Harbo, T, Monges, S, Van Den Bergh, P, Willison, H, Cornblath, D, Jacobs, B, Hughes, R, Gorson, K, Hartung, H, Van Doorn, P, Van den Berg, B, Roodbol, J, Van Woerkom, M, Reisin, R, Reddel, S, Islam, Z, Islam, B, Mohammad, Q, Feasby, T, Dardiotis, E, Nobile-Orazio, E, Bateman, K, Illa, I, Querol, L, Hsieh, S, Chavada, G, Addington, J, Ajroud-Driss, S, Andersen, H, Antonini, G, Ariatti, A, Attarian, S, Badrising, U, Barroso, F, Benedetti, L, Beronio, A, Bianco, M, Binda, D, Briani, C, Bunschoten, C, Burmann, J, Bella, I, Bertorini, T, Bhavaraju-Sanka, R, Brannagan, T, Busby, M, Butterworth, S, Casasnovas, C, Cavaletti, G, Chao, C, Chen, S, Chetty, S, Claeys, K, Conti, M, Cosgrove, J, Dalakas, M, Demichelis, C, Derejko, M, Dillmann, U, Dimachkie, M, Doppler, K, Dornonville de la Cour, C, Echaniz-Laguna, A, Eftimov, F, Faber, C, Fazio, R, Fokke, C, Fujioka, T, Fulgenzi, E, Garcia-Sobrino, T, Garssen, M, Georgios, H, Gijsbers, C, Gilchrist, J, Gilhuis, J, Giorli, E, Goldstein, J, Goyal, N, Granit, V, Grapperon, A, Gutierrez, G, Hadden, R, Holbech, J, Holt, J, Pedret, C, Htut, M, Jellema, K, Pascual, I, Jimeno-Montero, M, Kaida, K, Karafiath, S, Katzberg, H, Kiers, L, Kieseier, B, Kimpinski, K, Kleyweg, R, Kokubun, N, Kolb, N, Kuitwaard, K, Kuwabara, S, Kwan, J, Ladha, S, Lassen, L, Lawson, V, Ledingham, D, Lucy, S, Lunn, M, Magot, A, Manji, H, Marchesoni, C, Marfia, G, Infante, C, Hernandez, E, Mataluni, G, Mattiazi, M, Mcdermott, C, Meekins, G, Miller, J, Moris de la Tassa, G, Physiotherapist, J, Nascimbene, C, Nowak, R, Balaguer, P, Osei-Bonsu, M, Pan, E, Pardal, A, Pardo, J, Pasnoor, M, Pulley, M, Rajabally, Y, Rinaldi, S, Ritter, C, Roberts, R, Rojas-Marcos, I, Rudnicki, S, Ruiz, M, Sachs, G, Samijn, J, Santoro, L, Savransky, A, Schenone, A, Schwindling, L, Tous, M, Sekiguchi, Y, Sheikh, K, Silvestri, N, Sindrup, S, Sommer, C, Stein, B, Stino, A, Spyropoulos, A, Srinivasan, J, Styliani, R, Suzuki, H, Tankisi, H, Tigner, D, Twydell, P, Van Damme, P, Van der Kooi, A, Van Dijk, G, Van der Ree, T, Van Koningsveld, R, Valzania, F, Varrato, J, Vermeij, F, Verschuuren, J, Visser, L, Vytopil, M, Wilken, M, Wilkerson, C, Wirtz, P, Yamagishi, Y, Zhou, L, Zivkovic, S, Verboon C., Doets A. Y., Galassi G., Davidson A., Waheed W., Pereon Y., Shahrizaila N., Kusunoki S., Lehmann H. C., Harbo T., Monges S., Van Den Bergh P., Willison H. J., Cornblath D. R., Jacobs B. C., Hughes R. A. C., Gorson K. C., Hartung H. P., Van Doorn P. A., Van den Berg B., Roodbol J., Van Woerkom M., Reisin R. C., Reddel S. W., Islam Z., Islam B., Mohammad Q. D., Feasby T. E., Dardiotis E., Nobile-Orazio E., Bateman K., Illa I., Querol L., Hsieh S. T., Chavada G., Addington J. M., Ajroud-Driss S., Andersen H., Antonini G., Ariatti A., Attarian S., Badrising U. A., Barroso F. A., Benedetti L., Beronio A., Bianco M., Binda D., Briani C., Bunschoten C., Burmann J., Bella I. R., Bertorini T. E., Bhavaraju-Sanka R., Brannagan T. H., Busby M., Butterworth S., Casasnovas C., Cavaletti G., Chao C. C., Chen S., Chetty S., Claeys K. G., Conti M. E., Cosgrove J. S., Dalakas MC., Demichelis C., Derejko M. A., Dillmann U., Dimachkie M. M., Doppler K., Dornonville de la Cour C., Echaniz-Laguna A., Eftimov F., Faber C. G., Fazio R., Fokke C., Fujioka T., Fulgenzi E. A., Garcia-Sobrino T., Garssen M. P. J., Georgios H. M., Gijsbers C. J., Gilchrist J. M., Gilhuis J., Giorli E., Goldstein J. M., Goyal N. A., Granit V., Grapperon A., Gutierrez G., Hadden R. D. M., Holbech J. V., Holt J. K. L., Pedret C. H., Htut M., Jellema K., Pascual I. J., Jimeno-Montero M. C., Kaida K., Karafiath S., Katzberg H. D., Kiers L., Kieseier B. C., Kimpinski K., Kleyweg R. P., Kokubun N., Kolb N. A., Kuitwaard K., Kuwabara S., Kwan J. Y., Ladha S. S., Lassen L. L., Lawson V., Ledingham D., Lucy S. T., Lunn M. P. T., Magot A., Manji H., Marchesoni C., Marfia G. A., Infante C. M., Hernandez E. M., Mataluni G., Mattiazi M., McDermott C. J., Meekins G. D., Miller J. A. L., Moris de la Tassa G., Physiotherapist J. M., Nascimbene C., Nowak R. J., Balaguer P. O., Osei-Bonsu M., Pan E. B. L., Pardal A. M., Pardo J., Pasnoor M., Pulley M., Rajabally Y. A., Rinaldi S., Ritter C., Roberts R. C., Rojas-Marcos I., Rudnicki S. A., Ruiz M., Sachs G. M., Samijn J. P. A., Santoro L., Savransky A., Schenone A., Schwindling L., Tous M. J. S., Sekiguchi Y., Sheikh K. A., Silvestri N. J., Sindrup S. H., Sommer C. L., Stein B., Stino A. M., Spyropoulos A., Srinivasan J., Styliani R., Suzuki H., Tankisi H., Tigner D., Twydell P., Van Damme P., Van der Kooi A. J., Van Dijk G. W., Van der Ree T., Van Koningsveld R., Valzania F., Varrato J. D., Vermeij F. H., Verschuuren J., Visser L. H., Vytopil M. V., Wilken M., Wilkerson C., Wirtz P. W., Yamagishi Y., Zhou L., and Zivkovic S. A.

Abstract

ObjectiveTo define the current treatment practice of Guillain-Barré syndrome (GBS).MethodsThe study was based on prospective observational data from the first 1,300 patients included in the International GBS Outcome Study. We described the treatment practice of GBS in general, and for (1) severe forms (unable to walk independently), (2) no recovery after initial treatment, (3) treatment-related fluctuations, (4) mild forms (able to walk independently), and (5) variant forms including Miller Fisher syndrome, taking patient characteristics and hospital type into account.ResultsWe excluded 88 (7%) patients because of missing data, protocol violation, or alternative diagnosis. Patients from Bangladesh (n = 189, 15%) were described separately because 83% were not treated. IV immunoglobulin (IVIg), plasma exchange (PE), or other immunotherapy was provided in 941 (92%) of the remaining 1,023 patients, including patients with severe GBS (724/743, 97%), mild GBS (126/168, 75%), Miller Fisher syndrome (53/70, 76%), and other variants (33/40, 83%). Of 235 (32%) patients who did not improve after their initial treatment, 82 (35%) received a second immune modulatory treatment. A treatment-related fluctuation was observed in 53 (5%) of 1,023 patients, of whom 36 (68%) were re-treated with IVIg or PE.ConclusionsIn current practice, patients with mild and variant forms of GBS, or with treatment-related fluctuations and treatment failures, are frequently treated, even in absence of trial data to support this choice. The variability in treatment practice can be explained in part by the lack of evidence and guidelines for effective treatment in these situations.

Published
2019

10. Current treatment practice of Guillain-Barré syndrome

Author

Verboon C., Doets A. Y., Galassi G., Davidson A., Waheed W., Pereon Y., Shahrizaila N., Kusunoki S., Lehmann H. C., Harbo T., Monges S., Van Den Bergh P., Willison H. J., Cornblath D. R., Jacobs B. C., Hughes R. A. C., Gorson K. C., Hartung H. P., Van Doorn P. A., Van den Berg B., Roodbol J., Van Woerkom M., Reisin R. C., Reddel S. W., Islam Z., Islam B., Mohammad Q. D., Feasby T. E., Dardiotis E., Nobile-Orazio E., Bateman K., Illa I., Querol L., Hsieh S. T., Chavada G., Addington J. M., Ajroud-Driss S., Andersen H., Antonini G., Ariatti A., Attarian S., Badrising U. A., Barroso F. A., Benedetti L., Beronio A., Bianco M., Binda D., Briani C., Bunschoten C., Burmann J., Bella I. R., Bertorini T. E., Bhavaraju-Sanka R., Brannagan T. H., Busby M., Butterworth S., Casasnovas C., Cavaletti G., Chao C. C., Chen S., Chetty S., Claeys K. G., Conti M. E., Cosgrove J. S., Dalakas MC., Demichelis C., Derejko M. A., Dillmann U., Dimachkie M. M., Doppler K., Dornonville de la Cour C., Echaniz-Laguna A., Eftimov F., Faber C. G., Fazio R., Fokke C., Fujioka T., Fulgenzi E. A., Garcia-Sobrino T., Garssen M. P. J., Georgios H. M., Gijsbers C. J., Gilchrist J. M., Gilhuis J., Giorli E., Goldstein J. M., Goyal N. A., Granit V., Grapperon A., Gutierrez G., Hadden R. D. M., Holbech J. V., Holt J. K. L., Pedret C. H., Htut M., Jellema K., Pascual I. J., Jimeno-Montero M. C., Kaida K., Karafiath S., Katzberg H. D., Kiers L., Kieseier B. C., Kimpinski K., Kleyweg R. P., Kokubun N., Kolb N. A., Kuitwaard K., Kuwabara S., Kwan J. Y., Ladha S. S., Lassen L. L., Lawson V., Ledingham D., Lucy S. T., Lunn M. P. T., Magot A., Manji H., Marchesoni C., Marfia G. A., Infante C. M., Hernandez E. M., Mataluni G., Mattiazi M., McDermott C. J., Meekins G. D., Miller J. A. L., Moris de la Tassa G., Physiotherapist J. M., Nascimbene C., Nowak R. J., Balaguer P. O., Osei-Bonsu M., Pan E. B. L., Pardal A. M., Pardo J., Pasnoor M., Pulley M., Rajabally Y. A., Rinaldi S., Ritter C., Roberts R. C., Rojas-Marcos I., Rudnicki S. A., Ruiz M., Sachs G. M., Samijn J. P. A., Santoro L., Savransky A., Schenone A., Schwindling L., Tous M. J. S., Sekiguchi Y., Sheikh K. A., Silvestri N. J., Sindrup S. H., Sommer C. L., Stein B., Stino A. M., Spyropoulos A., Srinivasan J., Styliani R., Suzuki H., Tankisi H., Tigner D., Twydell P., Van Damme P., Van der Kooi A. J., Van Dijk G. W., Van der Ree T., Van Koningsveld R., Valzania F., Varrato J. D., Vermeij F. H., Verschuuren J., Visser L. H., Vytopil M. V., Wilken M., Wilkerson C., Wirtz P. W., Yamagishi Y., Zhou L., Zivkovic S. A., Neurology, AII - Infectious diseases, AII - Inflammatory diseases, ANS - Neuroinfection & -inflammation, Immunology, Erasmus MC other, UCL - SSS/IONS/NEUR - Clinical Neuroscience, UCL - (SLuc) Service de neurologie, Verboon, C, Doets, A, Galassi, G, Davidson, A, Waheed, W, Pereon, Y, Shahrizaila, N, Kusunoki, S, Lehmann, H, Harbo, T, Monges, S, Van Den Bergh, P, Willison, H, Cornblath, D, Jacobs, B, Hughes, R, Gorson, K, Hartung, H, Van Doorn, P, Van den Berg, B, Roodbol, J, Van Woerkom, M, Reisin, R, Reddel, S, Islam, Z, Islam, B, Mohammad, Q, Feasby, T, Dardiotis, E, Nobile-Orazio, E, Bateman, K, Illa, I, Querol, L, Hsieh, S, Chavada, G, Addington, J, Ajroud-Driss, S, Andersen, H, Antonini, G, Ariatti, A, Attarian, S, Badrising, U, Barroso, F, Benedetti, L, Beronio, A, Bianco, M, Binda, D, Briani, C, Bunschoten, C, Burmann, J, Bella, I, Bertorini, T, Bhavaraju-Sanka, R, Brannagan, T, Busby, M, Butterworth, S, Casasnovas, C, Cavaletti, G, Chao, C, Chen, S, Chetty, S, Claeys, K, Conti, M, Cosgrove, J, Dalakas, M, Demichelis, C, Derejko, M, Dillmann, U, Dimachkie, M, Doppler, K, Dornonville de la Cour, C, Echaniz-Laguna, A, Eftimov, F, Faber, C, Fazio, R, Fokke, C, Fujioka, T, Fulgenzi, E, Garcia-Sobrino, T, Garssen, M, Georgios, H, Gijsbers, C, Gilchrist, J, Gilhuis, J, Giorli, E, Goldstein, J, Goyal, N, Granit, V, Grapperon, A, Gutierrez, G, Hadden, R, Holbech, J, Holt, J, Pedret, C, Htut, M, Jellema, K, Pascual, I, Jimeno-Montero, M, Kaida, K, Karafiath, S, Katzberg, H, Kiers, L, Kieseier, B, Kimpinski, K, Kleyweg, R, Kokubun, N, Kolb, N, Kuitwaard, K, Kuwabara, S, Kwan, J, Ladha, S, Lassen, L, Lawson, V, Ledingham, D, Lucy, S, Lunn, M, Magot, A, Manji, H, Marchesoni, C, Marfia, G, Infante, C, Hernandez, E, Mataluni, G, Mattiazi, M, Mcdermott, C, Meekins, G, Miller, J, Moris de la Tassa, G, Physiotherapist, J, Nascimbene, C, Nowak, R, Balaguer, P, Osei-Bonsu, M, Pan, E, Pardal, A, Pardo, J, Pasnoor, M, Pulley, M, Rajabally, Y, Rinaldi, S, Ritter, C, Roberts, R, Rojas-Marcos, I, Rudnicki, S, Ruiz, M, Sachs, G, Samijn, J, Santoro, L, Savransky, A, Schenone, A, Schwindling, L, Tous, M, Sekiguchi, Y, Sheikh, K, Silvestri, N, Sindrup, S, Sommer, C, Stein, B, Stino, A, Spyropoulos, A, Srinivasan, J, Styliani, R, Suzuki, H, Tankisi, H, Tigner, D, Twydell, P, Van Damme, P, Van der Kooi, A, Van Dijk, G, Van der Ree, T, Van Koningsveld, R, Valzania, F, Varrato, J, Vermeij, F, Verschuuren, J, Visser, L, Vytopil, M, Wilken, M, Wilkerson, C, Wirtz, P, Yamagishi, Y, Zhou, L, and Zivkovic, S

Subjects
Adult, medicine.medical_specialty, Adolescent, Patient characteristics, PLASMA-EXCHANGE, 030204 cardiovascular system & hematology, Guillain-Barre Syndrome, Settore MED/26, Severity of Illness Index, 03 medical and health sciences, 0302 clinical medicine, Internal medicine, Severity of illness, Medicine, Effective treatment, INTRAVENOUS IMMUNOGLOBULIN, Humans, Prospective Studies, Child, Child, Preschool, Treatment Outcome, Prospective cohort study, Preschool, Guillain-Barre syndrome, business.industry, medicine.disease, RANDOMIZED-TRIAL, Prospective Studie, Hospital treatment, Treatment practice, Observational study, Neurology (clinical), business, 030217 neurology & neurosurgery, Human
Abstract

ObjectiveTo define the current treatment practice of Guillain-Barré syndrome (GBS).MethodsThe study was based on prospective observational data from the first 1,300 patients included in the International GBS Outcome Study. We described the treatment practice of GBS in general, and for (1) severe forms (unable to walk independently), (2) no recovery after initial treatment, (3) treatment-related fluctuations, (4) mild forms (able to walk independently), and (5) variant forms including Miller Fisher syndrome, taking patient characteristics and hospital type into account.ResultsWe excluded 88 (7%) patients because of missing data, protocol violation, or alternative diagnosis. Patients from Bangladesh (n = 189, 15%) were described separately because 83% were not treated. IV immunoglobulin (IVIg), plasma exchange (PE), or other immunotherapy was provided in 941 (92%) of the remaining 1,023 patients, including patients with severe GBS (724/743, 97%), mild GBS (126/168, 75%), Miller Fisher syndrome (53/70, 76%), and other variants (33/40, 83%). Of 235 (32%) patients who did not improve after their initial treatment, 82 (35%) received a second immune modulatory treatment. A treatment-related fluctuation was observed in 53 (5%) of 1,023 patients, of whom 36 (68%) were re-treated with IVIg or PE.ConclusionsIn current practice, patients with mild and variant forms of GBS, or with treatment-related fluctuations and treatment failures, are frequently treated, even in absence of trial data to support this choice. The variability in treatment practice can be explained in part by the lack of evidence and guidelines for effective treatment in these situations.

Published
2019
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11. Guía clínica para el diagnóstico y seguimiento de la distrofia miotónica tipo 1, DM1 o enfermedad de Steinert

Author

Jon Andoni Urtizberea, Camacho, Salas, A, Olivar, Roldan, J, Eulalio, Barcena, J, M. Rabasa, A. Ramos, H. Pérez, Garcia, Pavia, P, Gustavo Zapata-Wainberg, Rubio, Perez, Ma, Cabezudo, Garcia, P, Gallano, Petit, Mp, Roberto Fernández-Torrón, Casanova, Rodriguez, C, Moreno, Zabaleta, R, López de Munain A, Rosado, Bartolome, A, Poza, Aldea, Jj, I. Jericó, Jordi Díaz-Manera, Diaz, Guardiola, P, José Luis Muñoz-Blanco, Peinado, Peinado, R, Pascual, Pascual, Si, Eduardo Gutiérrez-Rivas, Kapetanovic, Garcia, S, Moris, de, la, Tassa, G, Gutierrez, Gutierrez, G, Loreto Martorell, Gomez, Gallego, M, S. Azriel, Gutierrez, Martinez, Aj, Miriam Almendrote, Cobo Am, UAM. Departamento de Medicina, and UAM. Departamento de Pediatría

Subjects
medicine.medical_specialty, complications, dysphagia, lung-function, Medicina, Enfermedad de Steinert, Disfagia, Disease, Guía clínica, Myotonic dystrophy, lcsh:RC346-429, Enfermedadde Steinert, 03 medical and health sciences, 0302 clinical medicine, cardiac abnormalities, Distrofia miotónica tipo 1, medicine, cancer-risk, myotonic dystrophy type 1, lcsh:Neurology. Diseases of the nervous system, childhood, Distrofia miotónicatipo 1, Gynecology, long-term, clinical guideline, business.industry, General Medicine, daytime sleepiness, medicine.disease, muscle involvement, Complicaciones, frequency, recommendations, Recomendaciones, muscular-dystrophy, Neurology (clinical), steinert's disease, business, oral-health, 030217 neurology & neurosurgery
Abstract

Antecedentes y objetivos: La enfermedad de Steinert o distrofia miotónica tipo 1 (DM1),(OMIM 160900) es la miopatía más prevalente en el adulto. Es una enfermedad multisistémica con alteración de prácticamente todos los órganos y tejidos y una variabilidad fenotípica muy amplia, lo que implica que deba ser atendida por diferentes especialistas que dominen las alteraciones más importantes. En los últimos años se ha avanzado de manera exponencial en el conocimiento de la enfermedad y en su manejo. El objetivo de la guía es establecer recomendaciones para el diagnóstico, el pronóstico, el seguimiento y el tratamiento de las diferentes alteraciones de la DM1.Material y métodos: Esta guía de consenso se ha realizado de manera multidisciplinar. Se ha contado con neurólogos, neumólogos, cardiólogos, endocrinólogos, neuropediatras y genetistas que han realizado una revisión sistemática de la literatura. Recomendaciones: Se recomienda realizar un diagnóstico genético con cuantificación precisade tripletes CTG. Los pacientes con DM1 deben seguir control cardiológico y neumológico de por vida. Antes de cualquier cirugía con anestesia general debe realizarse una evaluación respiratoria. Debe monitorizarse la presencia de síntomas de disfagia periódicamente. Debe ofrecerse consejo genético a los pacientes con DM1 y a sus familiares.Conclusión: La DM1 es una enfermedad multisistémica que requiere un seguimiento en unidades especializadas multidisciplinares., Background and objectives: Steinert’s disease or myotonic dystrophy type 1 (MD1), (OMIM160900), is the most prevalent myopathy in adults. It is a multisystemic disorder with dys-function of virtually all organs and tissues and a great phenotypical variability, which impliesthat it has to be addressed by different specialities with experience in the disease. The know-ledge of the disease and its management has changed dramatically in recent years. This guidetries to establish recommendations for the diagnosis, prognosis, follow-up and treatment of thecomplications of MD1.Material and methods: Consensus guide developed through a multidisciplinary approach witha systematic literature review. Neurologists, pulmonologists, cardiologists, endocrinologists, neuropaediatricians and geneticists have participated in the guide. Recommendations: The genetic diagnosis should quantify the number of CTG repetitions. MD1patients need cardiac and respiratory lifetime follow-up. Before any surgery under generalanaesthesia, a respiratory evaluation must be done. Dysphagia must be screened periodically.Genetic counselling must be offered to patients and relatives. Conclusion: MD1 is a multisystemic disease that requires specialised multidisciplinaryfollow-up.

Published
2019

14. 514VP Latent tuberculosis infection in myasthenia gravis patients in a low-incidence region.

Author

Carbonero, C., Arias, M., Mozo, L., Palacios, J., and Moris De La Tassa, G.

Subjects
*LATENT tuberculosis, *TUBERCULIN test, *INTRAVENOUS immunoglobulins, *BCG vaccines, *CHOLINERGIC receptors, *MYASTHENIA gravis
Abstract

The aim of this study is to investigate the burden of latent tuberculosis infection (LTBI) and tuberculosis (TB) reactivation rate in a population of patients with myasthenia gravis (MG). Patients older than 18 years diagnosed with MG with positive acetylcholine receptor antibodies (Anti-AChR) between January 2015 and December 2023 were included. Epidemiological and disease data were collected retrospectively. Microbiological studies included the interferon-gamma release assay (IGRA), QuantiFERON-TB Gold Plus (QFT) and/or T-SPOT.TB (TSTB), for Mycobacterium tuberculosis to rule out LTB. 89 patients with a new diagnosis of MG were registered. IGRA was performed on 70 patients,13 (69% female) patients (19%) testing positive. The mean age of IGRA-positive patients was 75 years with a mean disease duration of 4 years. Of the 13 IGRA-positive patients, two patients had early-onset MG. Two patients underwent thymectomy without thymoma. Four patients had ocular forms, and 9 patients had generalized forms. The mean Anti-AChR diagnosis value was 44.2 nmol/L. Four patients had MGFA stage I, three had stage IIb, one had stage IIIa, four had stage IIIb, and one had stage V. 10 patients were on pyridostigmine (mean dose 165 mg/day), eight with prednisone (38.4 mg/day), two on azathioprine, and one had received a course of intravenous immunoglobulins. Three patients had received BCG vaccination. None of the patients had abnormalities on chest X-rays, and only three patients underwent the Mantoux test, which was negative. No patient developed active TB Patients received treatment for LTBI except one who was older than 90 years. The mean delay in treatment initiation was 383 days. Nine patients received 300 mg isoniazid/day for 9 months, and three patients received a combination of 300 mg isoniazid/day and 600 mg rifampicin/day for 3 months. No patient presented hepatic toxicity. Even in regions with a low incidence of TB, it is important to rule out the presence of LTBI in patients with MG on immunosuppressive therapy, as therapy with tuberculostatic drugs reduces the risk of developing active TB. [ABSTRACT FROM AUTHOR]

Published
2024
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