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1. Electrodiagnostic subtyping in Guillain–Barré syndrome patients in the International Guillain–Barré Outcome Study

Author

Arends, S, Drenthen, J, de Koning, L, van den Bergh, P, Hadden, R, Kuwabara, S, Reisin, R, Shahrizaila, N, Ajroud-Driss, S, Antonini, G, Attarian, S, Balducci, C, Bertorini, T, Brannagan, T, Cavaletti, G, Chao, C, Chavada, G, Dillmann, K, Dimachkie, M, Galassi, G, Gutierrez-Gutierrez, G, Harbo, T, Islam, B, Islam, Z, Katzberg, H, Kusunoki, S, Manganelli, F, Miller, J, Pardo, J, Pereon, Y, Rajabally, Y, Sindrup, S, Stettner, M, Uncini, A, Verhamme, C, Vytopil, M, Waheed, W, Jacobs, B, Cornblath, D, Addington, J, Badrising, U, Barroso, F, Bateman, K, Bella, I, Benedetti, L, van den Berg, B, Bhavaraju-Sanka, R, Briani, C, Buermann, J, Busby, M, Butterworth, S, Casasnovas, C, Chen, S, Claeys, K, Conti, E, Cosgrove, J, Dalakas, M, van Damme, P, Dardiotis, E, Davidson, A, Doets, A, van Doorn, P, Echaniz-Laguna, A, Eftimov, F, Faber, K, Fazio, R, Feasby, T, Fehmi, J, Fokke, C, Fujioka, T, Fulgenzi, E, Garssen, M, Gijsbers, C, Gilchrist, J, Gilhuis, J, Goldstein, J, Gorson, K, Goyal, N, Granit, V, Gutmann, L, Hartung, H, Holt, J, Hsieh, S, Htut, M, Hughes, R, Jerico-Pascual, I, Kaida, K, Karafiath, S, Khoshnoodi, M, Kiers, L, Kleiweg, R, Kokubun, N, Kolb, N, van Koningsveld, R, van der Kooi, A, Kramers, H, Kuitwaard, K, Kwan, J, Ladha, S, Lassen, L, Lawson, V, Lehmann, H, Cejas, L, Leonhard, S, Luijten, L, Lunn, M, Manji, H, Marfia, G, Infante, C, Martin-Aguilar, L, Martinez-Hernandez, E, Mataluni, G, Mattiazzi, M, Mcdermott, C, Meekins, G, Mohammad, Q, Monges, S, de la Tassa, G, Nascimbene, C, Nobile-Orazio, E, Nowak, R, Osei-Bonsu, M, Pelouto, F, Pulley, M, Gutierrez, L, Reddel, S, van der Ree, T, Rinaldi, S, Ripellino, P, Roberts, R, Rojas-Marcos, I, Roodbol, J, Rudnicki, S, Sachs, G, Samijn, J, Santoro, L, Schenone, A, Tous, M, Sheikh, K, Silvestri, N, Sundrup, S, Sommer, C, Stein, B, Stino, A, Thomma, R, Twydell, P, Varrato, J, Vermeij, F, Verschuuren, J, Visser, L, Walgaard, C, Wang, Y, Willison, H, Wirtz, P, van Woerkom, M, Zivkovic, S, Arends S., Drenthen J., de Koning L., van den Bergh P., Hadden R. D. M., Kuwabara S., Reisin R. C., Shahrizaila N., Ajroud-Driss S., Antonini G., Attarian S., Balducci C., Bertorini T., Brannagan T. H., Cavaletti G., Chao C. -C., Chavada G., Dillmann K. -U., Dimachkie M. M., Galassi G., Gutierrez-Gutierrez G., Harbo T., Islam B., Islam Z., Katzberg H., Kusunoki S., Manganelli F., Miller J. A. L., Pardo J., Pereon Y., Rajabally Y. A., Sindrup S., Stettner M., Uncini A., Verhamme C., Vytopil M., Waheed W., Jacobs B. C., Cornblath D. R., Addington J. M., Badrising U. A., Barroso F. A., Bateman K., Bella I., Benedetti L., van den Berg B., Bhavaraju-Sanka R., Briani C., Buermann J., Busby M., Butterworth S., Casasnovas C., Chen S., Claeys K., Conti E., Cosgrove J. S., Dalakas M., van Damme P., Dardiotis E., Davidson A., Doets A., van Doorn P., Echaniz-Laguna A., Eftimov F., Faber K. G., Fazio R., Feasby T. E., Fehmi J., Fokke C., Fujioka T., Fulgenzi E., Garssen M. P. J., Gijsbers C. J., Gilchrist J. M., Gilhuis J., Goldstein J. M., Gorson K. C., Goyal N., Granit V., Gutmann L., Hartung H. -P., Holt J. K. L., Hsieh S. -T., Htut M., Hughes R. A. C., Jerico-Pascual I., Kaida K., Karafiath S., Khoshnoodi M. A., Kiers L., Kleiweg R. P., Kokubun N., Kolb N. A., van Koningsveld R., van der Kooi A. J., Kramers H., Kuitwaard K., Kwan J. Y., Ladha S. S., Lassen L. L., Lawson V. H., Lehmann H., Cejas L. L., Leonhard S. E., Luijten L., Lunn M. P. T., Manji H., Marfia G. A., Infante C. M., Martin-Aguilar L., Martinez-Hernandez E., Mataluni G., Mattiazzi M., McDermott C., Meekins G., Mohammad Q. D., Monges S., de la Tassa G. M., Nascimbene C., Nobile-Orazio E., Nowak R. J., Osei-Bonsu M., Pelouto F., Pulley M. T., Gutierrez L. Q., Reddel S. W., van der Ree T., Rinaldi S., Ripellino P., Roberts R. C., Rojas-Marcos I., Roodbol J., Rudnicki S. A., Sachs G. M., Samijn J. P. A., Santoro L., Schenone A., Tous M. J. S., Sheikh K. A., Silvestri N. J., Sundrup S. H., Sommer C., Stein B., Stino A. M., Thomma R. C. M., Twydell P., Varrato J. D., Vermeij F. H., Verschuuren J., Visser L. H., Walgaard C., Wang Y., Willison H. J., Wirtz P. W., van Woerkom M., Zivkovic S. A., Arends, S, Drenthen, J, de Koning, L, van den Bergh, P, Hadden, R, Kuwabara, S, Reisin, R, Shahrizaila, N, Ajroud-Driss, S, Antonini, G, Attarian, S, Balducci, C, Bertorini, T, Brannagan, T, Cavaletti, G, Chao, C, Chavada, G, Dillmann, K, Dimachkie, M, Galassi, G, Gutierrez-Gutierrez, G, Harbo, T, Islam, B, Islam, Z, Katzberg, H, Kusunoki, S, Manganelli, F, Miller, J, Pardo, J, Pereon, Y, Rajabally, Y, Sindrup, S, Stettner, M, Uncini, A, Verhamme, C, Vytopil, M, Waheed, W, Jacobs, B, Cornblath, D, Addington, J, Badrising, U, Barroso, F, Bateman, K, Bella, I, Benedetti, L, van den Berg, B, Bhavaraju-Sanka, R, Briani, C, Buermann, J, Busby, M, Butterworth, S, Casasnovas, C, Chen, S, Claeys, K, Conti, E, Cosgrove, J, Dalakas, M, van Damme, P, Dardiotis, E, Davidson, A, Doets, A, van Doorn, P, Echaniz-Laguna, A, Eftimov, F, Faber, K, Fazio, R, Feasby, T, Fehmi, J, Fokke, C, Fujioka, T, Fulgenzi, E, Garssen, M, Gijsbers, C, Gilchrist, J, Gilhuis, J, Goldstein, J, Gorson, K, Goyal, N, Granit, V, Gutmann, L, Hartung, H, Holt, J, Hsieh, S, Htut, M, Hughes, R, Jerico-Pascual, I, Kaida, K, Karafiath, S, Khoshnoodi, M, Kiers, L, Kleiweg, R, Kokubun, N, Kolb, N, van Koningsveld, R, van der Kooi, A, Kramers, H, Kuitwaard, K, Kwan, J, Ladha, S, Lassen, L, Lawson, V, Lehmann, H, Cejas, L, Leonhard, S, Luijten, L, Lunn, M, Manji, H, Marfia, G, Infante, C, Martin-Aguilar, L, Martinez-Hernandez, E, Mataluni, G, Mattiazzi, M, Mcdermott, C, Meekins, G, Mohammad, Q, Monges, S, de la Tassa, G, Nascimbene, C, Nobile-Orazio, E, Nowak, R, Osei-Bonsu, M, Pelouto, F, Pulley, M, Gutierrez, L, Reddel, S, van der Ree, T, Rinaldi, S, Ripellino, P, Roberts, R, Rojas-Marcos, I, Roodbol, J, Rudnicki, S, Sachs, G, Samijn, J, Santoro, L, Schenone, A, Tous, M, Sheikh, K, Silvestri, N, Sundrup, S, Sommer, C, Stein, B, Stino, A, Thomma, R, Twydell, P, Varrato, J, Vermeij, F, Verschuuren, J, Visser, L, Walgaard, C, Wang, Y, Willison, H, Wirtz, P, van Woerkom, M, Zivkovic, S, Arends S., Drenthen J., de Koning L., van den Bergh P., Hadden R. D. M., Kuwabara S., Reisin R. C., Shahrizaila N., Ajroud-Driss S., Antonini G., Attarian S., Balducci C., Bertorini T., Brannagan T. H., Cavaletti G., Chao C. -C., Chavada G., Dillmann K. -U., Dimachkie M. M., Galassi G., Gutierrez-Gutierrez G., Harbo T., Islam B., Islam Z., Katzberg H., Kusunoki S., Manganelli F., Miller J. A. L., Pardo J., Pereon Y., Rajabally Y. A., Sindrup S., Stettner M., Uncini A., Verhamme C., Vytopil M., Waheed W., Jacobs B. C., Cornblath D. R., Addington J. M., Badrising U. A., Barroso F. A., Bateman K., Bella I., Benedetti L., van den Berg B., Bhavaraju-Sanka R., Briani C., Buermann J., Busby M., Butterworth S., Casasnovas C., Chen S., Claeys K., Conti E., Cosgrove J. S., Dalakas M., van Damme P., Dardiotis E., Davidson A., Doets A., van Doorn P., Echaniz-Laguna A., Eftimov F., Faber K. G., Fazio R., Feasby T. E., Fehmi J., Fokke C., Fujioka T., Fulgenzi E., Garssen M. P. J., Gijsbers C. J., Gilchrist J. M., Gilhuis J., Goldstein J. M., Gorson K. C., Goyal N., Granit V., Gutmann L., Hartung H. -P., Holt J. K. L., Hsieh S. -T., Htut M., Hughes R. A. C., Jerico-Pascual I., Kaida K., Karafiath S., Khoshnoodi M. A., Kiers L., Kleiweg R. P., Kokubun N., Kolb N. A., van Koningsveld R., van der Kooi A. J., Kramers H., Kuitwaard K., Kwan J. Y., Ladha S. S., Lassen L. L., Lawson V. H., Lehmann H., Cejas L. L., Leonhard S. E., Luijten L., Lunn M. P. T., Manji H., Marfia G. A., Infante C. M., Martin-Aguilar L., Martinez-Hernandez E., Mataluni G., Mattiazzi M., McDermott C., Meekins G., Mohammad Q. D., Monges S., de la Tassa G. M., Nascimbene C., Nobile-Orazio E., Nowak R. J., Osei-Bonsu M., Pelouto F., Pulley M. T., Gutierrez L. Q., Reddel S. W., van der Ree T., Rinaldi S., Ripellino P., Roberts R. C., Rojas-Marcos I., Roodbol J., Rudnicki S. A., Sachs G. M., Samijn J. P. A., Santoro L., Schenone A., Tous M. J. S., Sheikh K. A., Silvestri N. J., Sundrup S. H., Sommer C., Stein B., Stino A. M., Thomma R. C. M., Twydell P., Varrato J. D., Vermeij F. H., Verschuuren J., Visser L. H., Walgaard C., Wang Y., Willison H. J., Wirtz P. W., van Woerkom M., and Zivkovic S. A.

Abstract

Background and purpose: Various electrodiagnostic criteria have been developed in Guillain–Barré syndrome (GBS). Their performance in a broad representation of GBS patients has not been evaluated. Motor conduction data from the International GBS Outcome Study (IGOS) cohort were used to compare two widely used criterion sets and relate these to diagnostic amyotrophic lateral sclerosis criteria. Methods: From the first 1500 patients in IGOS, nerve conduction studies from 1137 (75.8%) were available for the current study. These patients were classified according to nerve conduction studies criteria proposed by Hadden and Rajabally. Results: Of the 1137 studies, 68.3% (N = 777) were classified identically according to criteria by Hadden and Rajabally: 111 (9.8%) axonal, 366 (32.2%) demyelinating, 195 (17.2%) equivocal, 35 (3.1%) inexcitable and 70 (6.2%) normal. Thus, 360 studies (31.7%) were classified differently. The areas of differences were as follows: 155 studies (13.6%) classified as demyelinating by Hadden and axonal by Rajabally; 122 studies (10.7%) classified as demyelinating by Hadden and equivocal by Rajabally; and 75 studies (6.6%) classified as equivocal by Hadden and axonal by Rajabally. Due to more strictly defined cutoffs fewer patients fulfilled demyelinating criteria by Rajabally than by Hadden, making more patients eligible for axonal or equivocal classification by Rajabally. In 234 (68.6%) axonal studies by Rajabally the revised El Escorial (amyotrophic lateral sclerosis) criteria were fulfilled; in axonal cases by Hadden this was 1.8%. Conclusions and discussion: This study shows that electrodiagnosis in GBS is dependent on the criterion set utilized, both of which are based on expert opinion. Reappraisal of electrodiagnostic subtyping in GBS is warranted.

Published
2024

3. The Dutch Dystrophinopathy Database: A National Registry with Standardized Patient and Clinician Reported Real-World Data

Author

Neurologen, Epi Methoden Team 1, Arts Assistenten Longziekten, van de Velde, N. M., Krom, Y. D., Bongers, J., Hoek, R. J.A., Ikelaar, N. A., van der Holst, M., Naarding, K. J., van den Bergen, J. C., Vroom, E., Horemans, A., Hendriksen, J. G.M., de Groot, I. J.M., Opstal, S. L.S.Houwen Van, Verschuuren, J. J.G.M., van Duyvenvoorde, H. A., Snijder, R. R., Niks, E. H., Neurologen, Epi Methoden Team 1, Arts Assistenten Longziekten, van de Velde, N. M., Krom, Y. D., Bongers, J., Hoek, R. J.A., Ikelaar, N. A., van der Holst, M., Naarding, K. J., van den Bergen, J. C., Vroom, E., Horemans, A., Hendriksen, J. G.M., de Groot, I. J.M., Opstal, S. L.S.Houwen Van, Verschuuren, J. J.G.M., van Duyvenvoorde, H. A., Snijder, R. R., and Niks, E. H.

Published
2024

4. Reflectie met beleidsaanbevelingen naar aanleiding van het rapport ‘De Europees -en internationaalrechtelijke status van de Waddenzee’

Author

Parel Water en duurzaamheid / UCWOSL, Europees en nationaal waterrecht, van Rijswick, Helena, Bastmeijer, C.J. (Kees), Boerema, Luuk, Gilissen, Herman Kasper, Kistenkas , F., Miltenburg, L., Trouwborst, A., Verschuuren, J., Zwier, W, Parel Water en duurzaamheid / UCWOSL, Europees en nationaal waterrecht, van Rijswick, Helena, Bastmeijer, C.J. (Kees), Boerema, Luuk, Gilissen, Herman Kasper, Kistenkas , F., Miltenburg, L., Trouwborst, A., Verschuuren, J., and Zwier, W

Published
2024

5. Reflectie met beleidsaanbevelingen : naar aanleiding van het rapport ‘De Europees - en internationaalrechtelijke status van de Waddenzee’

Author

Bastmeijer, K., Boerema, L., Gilissen, H.K., Kistenkas, F., Miltenburg, L., Rijswick, M. van, Trouwborst, A., Verschuuren, J., Zwier, W., Bastmeijer, K., Boerema, L., Gilissen, H.K., Kistenkas, F., Miltenburg, L., Rijswick, M. van, Trouwborst, A., Verschuuren, J., and Zwier, W.

Abstract

Dit rapport bevat een reflectie en vijftien beleidsaanbevelingen naar aanleiding van het rapport ‘De Europees- en internationaalrechtelijke status van de Waddenzee’ (Waddenacademie, december 2023).

Published
2024

7. CSF Findings in Relation to Clinical Characteristics, Subtype, and Disease Course in Patients With Guillain-Barré Syndrome

Author

Al-Hakem, H, Doets, A, Stino, A, Zivkovic, S, Andersen, H, Willison, H, Cornblath, D, Gorson, K, Islam, Z, Mohammad, Q, Sindrup, S, Kusunoki, S, Davidson, A, Casasnovas, C, Bateman, K, Miller, J, Van Den Berg, B, Verboon, C, Roodbol, J, Leonhard, S, Arends, S, Luijten, L, Benedetti, L, Kuwabara, S, Van Den Bergh, P, Monges, S, Marfia, G, Shahrizaila, N, Galassi, G, Pereon, Y, Burmann, J, Kuitwaard, K, Kleyweg, R, Marchesoni, C, Tous, M, Querol, L, Martin-Aguilar, L, Wang, Y, Nobile-Orazio, E, Rinaldi, S, Schenone, A, Pardo, J, Vermeij, F, Waheed, W, Lehmann, H, Granit, V, Stein, B, Cavaletti, G, Gutierrez-Gutierrez, G, Barroso, F, Visser, L, Katzberg, H, Dardiotis, E, Attarian, S, Van Der Kooi, A, Eftimov, F, Wirtz, P, Samijn, J, Jacobus Gilhuis, H, Hadden, R, Holt, J, Sheikh, K, Kolb, N, Karafiath, S, Vytopil, M, Antonini, G, Feasby, T, Faber, C, Kramers, H, Busby, M, Roberts, R, Silvestri, N, Fazio, R, Van Dijk, G, Garssen, M, Verschuuren, J, Harbo, T, Jacobs, B, Al-Hakem H., Doets A. Y., Stino A. M., Zivkovic S. A., Andersen H., Willison H. J., Cornblath D. R., Gorson K. C., Islam Z., Mohammad Q. D., Sindrup So. H., Kusunoki S., Davidson A., Casasnovas C., Bateman K., Miller J. A. L., Van Den Berg B., Verboon C., Roodbol J., Leonhard S. E., Arends S., Luijten L. W. G., Benedetti L., Kuwabara S., Van Den Bergh P., Monges S., Marfia G. A., Shahrizaila N., Galassi G., Pereon Y., Burmann J., Kuitwaard K., Kleyweg R. P., Marchesoni C., Tous M. J. S., Querol L., Martin-Aguilar L., Wang Y., Nobile-Orazio E., Rinaldi S., Schenone A., Pardo J., Vermeij F. H., Waheed W., Lehmann H. C., Granit V., Stein B., Cavaletti G., Gutierrez-Gutierrez G., Barroso F. A., Visser L. H., Katzberg H. D., Dardiotis E., Attarian S., Van Der Kooi A. J., Eftimov F., Wirtz P. W., Samijn J. P. A., Jacobus Gilhuis H., Hadden R. D. M., Holt J. K. L., Sheikh K. A., Kolb N., Karafiath S., Vytopil M., Antonini G., Feasby T. E., Faber C., Kramers H., Busby M., Roberts R. C., Silvestri N. J., Fazio R., Van Dijk G. W., Garssen M. P. J., Verschuuren J., Harbo T., Jacobs B. C., Al-Hakem, H, Doets, A, Stino, A, Zivkovic, S, Andersen, H, Willison, H, Cornblath, D, Gorson, K, Islam, Z, Mohammad, Q, Sindrup, S, Kusunoki, S, Davidson, A, Casasnovas, C, Bateman, K, Miller, J, Van Den Berg, B, Verboon, C, Roodbol, J, Leonhard, S, Arends, S, Luijten, L, Benedetti, L, Kuwabara, S, Van Den Bergh, P, Monges, S, Marfia, G, Shahrizaila, N, Galassi, G, Pereon, Y, Burmann, J, Kuitwaard, K, Kleyweg, R, Marchesoni, C, Tous, M, Querol, L, Martin-Aguilar, L, Wang, Y, Nobile-Orazio, E, Rinaldi, S, Schenone, A, Pardo, J, Vermeij, F, Waheed, W, Lehmann, H, Granit, V, Stein, B, Cavaletti, G, Gutierrez-Gutierrez, G, Barroso, F, Visser, L, Katzberg, H, Dardiotis, E, Attarian, S, Van Der Kooi, A, Eftimov, F, Wirtz, P, Samijn, J, Jacobus Gilhuis, H, Hadden, R, Holt, J, Sheikh, K, Kolb, N, Karafiath, S, Vytopil, M, Antonini, G, Feasby, T, Faber, C, Kramers, H, Busby, M, Roberts, R, Silvestri, N, Fazio, R, Van Dijk, G, Garssen, M, Verschuuren, J, Harbo, T, Jacobs, B, Al-Hakem H., Doets A. Y., Stino A. M., Zivkovic S. A., Andersen H., Willison H. J., Cornblath D. R., Gorson K. C., Islam Z., Mohammad Q. D., Sindrup So. H., Kusunoki S., Davidson A., Casasnovas C., Bateman K., Miller J. A. L., Van Den Berg B., Verboon C., Roodbol J., Leonhard S. E., Arends S., Luijten L. W. G., Benedetti L., Kuwabara S., Van Den Bergh P., Monges S., Marfia G. A., Shahrizaila N., Galassi G., Pereon Y., Burmann J., Kuitwaard K., Kleyweg R. P., Marchesoni C., Tous M. J. S., Querol L., Martin-Aguilar L., Wang Y., Nobile-Orazio E., Rinaldi S., Schenone A., Pardo J., Vermeij F. H., Waheed W., Lehmann H. C., Granit V., Stein B., Cavaletti G., Gutierrez-Gutierrez G., Barroso F. A., Visser L. H., Katzberg H. D., Dardiotis E., Attarian S., Van Der Kooi A. J., Eftimov F., Wirtz P. W., Samijn J. P. A., Jacobus Gilhuis H., Hadden R. D. M., Holt J. K. L., Sheikh K. A., Kolb N., Karafiath S., Vytopil M., Antonini G., Feasby T. E., Faber C., Kramers H., Busby M., Roberts R. C., Silvestri N. J., Fazio R., Van Dijk G. W., Garssen M. P. J., Verschuuren J., Harbo T., and Jacobs B. C.

Abstract

Background and ObjectivesTo investigate CSF findings in relation to clinical and electrodiagnostic subtypes, severity, and outcome of Guillain-Barré syndrome (GBS) based on 1,500 patients in the International GBS Outcome Study.MethodsAlbuminocytologic dissociation (ACD) was defined as an increased protein level (>0.45 g/L) in the absence of elevated white cell count (<50 cells/L). We excluded 124 (8%) patients because of other diagnoses, protocol violation, or insufficient data. The CSF was examined in 1,231 patients (89%).ResultsIn 846 (70%) patients, CSF examination showed ACD, which increased with time from weakness onset: ≤4 days 57%, >4 days 84%. High CSF protein levels were associated with a demyelinating subtype, proximal or global muscle weakness, and a reduced likelihood of being able to run at week 2 (odds ratio [OR] 0.42, 95% CI 0.25-0.70; p = 0.001) and week 4 (OR 0.44, 95% CI 0.27-0.72; p = 0.001). Patients with the Miller Fisher syndrome, distal predominant weakness, and normal or equivocal nerve conduction studies were more likely to have lower CSF protein levels. CSF cell count was <5 cells/L in 1,005 patients (83%), 5-49 cells/L in 200 patients (16%), and ≥50 cells/L in 13 patients (1%).DiscussionACD is a common finding in GBS, but normal protein levels do not exclude this diagnosis. High CSF protein level is associated with an early severe disease course and a demyelinating subtype. Elevated CSF cell count, rarely ≥50 cells/L, is compatible with GBS after a thorough exclusion of alternative diagnoses.Classification of EvidenceThis study provides Class IV evidence that CSF ACD (defined by the Brighton Collaboration) is common in patients with GBS.

Published
2023

9. P277 Long-term safety, tolerability, and efficacy of Efgartigimod in patients with Generalized Myasthenia Gravis: concluding analyses from the ADAPT+ study

Author

Ashcraft, E., primary, Bril, V., additional, Pasnoor, M., additional, Karam, C., additional, Peric, S., additional, De Bleecker, J., additional, Murai, H., additional, Meisel, A., additional, Beydoun, S., additional, Vu, T., additional, Ulrichts, P., additional, Van Hoorick, B., additional, T'joen, C., additional, Utsugisawa, K., additional, Verschuuren, J., additional, Mantegazza, R., additional, and Howard, J., additional

Published
2023
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10. De Europees- en internationaalrechtelijke status van de Waddenzee: Een analyse van de relevantie van EU-richtlijnen en internationale verdragen voor de bescherming en het beheer van de Waddenzee met een doorkijk naar de Nederlandse implementatie

Author

van Rijswick, Helena, Bastmeijer, C.J. (Kees), Boerema, Luuk, Gilissen, Herman Kasper, Kistenkas , F., Miltenburg, L., Trouwborst, A., Verschuuren, J., Zwier, W., van Rijswick, Helena, Bastmeijer, C.J. (Kees), Boerema, Luuk, Gilissen, Herman Kasper, Kistenkas , F., Miltenburg, L., Trouwborst, A., Verschuuren, J., and Zwier, W.

Abstract

In nauwe afstemming en samenwerking met de ministeries van LNV en IenW heeft Rijkswaterstaat de Waddenacademie gevraagd een onderzoek uit te voeren naar voor de Waddenzee geldende internationale verdragen en Europese richtlijnen op het gebied van natuur- en waterbescherming. Doelstelling van het onderzoek is om een gedegen overzicht te krijgen van de inhoud en concrete consequenties van de internationale en Europese beschermingsregimes voor de Waddenzee. Wat zijn de doelen die bereikt moeten worden, welke verboden en verplichtingen vloeien er uit verdragen en EU-richtlijnen voort en besteden de beschermingsregimes ook aandacht aan onderwerpen zoals klimaatverandering, cumulatieve effecten, actief natuurherstel en monitoring? Deze en andere vragen worden voor 13 regimes in afzonderlijke hoofdstukken door juridische experts beantwoord en de bevindingen zijn samengebracht in een uitvoerig samenvattend hoofdstuk.

Published
2023

11. De Europees- en internationaalrechtelijke status van de Waddenzee: Een analyse van de relevantie van EU-richtlijnen en internationale verdragen voor de bescherming en het beheer van de Waddenzee met een doorkijk naar de Nederlandse implementatie

Author

Parel Water en duurzaamheid / UCWOSL, Europees en nationaal waterrecht, van Rijswick, Helena, Bastmeijer, C.J. (Kees), Boerema, Luuk, Gilissen, Herman Kasper, Kistenkas , F., Miltenburg, L., Trouwborst, A., Verschuuren, J., Zwier, W., Parel Water en duurzaamheid / UCWOSL, Europees en nationaal waterrecht, van Rijswick, Helena, Bastmeijer, C.J. (Kees), Boerema, Luuk, Gilissen, Herman Kasper, Kistenkas , F., Miltenburg, L., Trouwborst, A., Verschuuren, J., and Zwier, W.

Published
2023

12. Europees - en internationaalrechtelijke status van de Waddenzee : Een analyse van de relevantie van EU-richtlijnen en internationale verdragen voor de bescherming en het beheer van de Waddenzee met een doorkijk naar de Nederlandse implementatie

Author

Bastmeijer, K., Boerema, L., Gilissen, H.K., Kistenkas, F., Miltenburg, L., Rijswick, M. van, Trouwborst, A., Verschuuren, J., Zwier, W., Bastmeijer, K., Boerema, L., Gilissen, H.K., Kistenkas, F., Miltenburg, L., Rijswick, M. van, Trouwborst, A., Verschuuren, J., and Zwier, W.

Abstract

In nauwe afstemming en samenwerking met de ministeries van LNV en IenW heeft Rijkswaterstaat de Waddenacademie gevraagd een onderzoek uit te voeren naar voor de Waddenzee geldende internationale verdragen en Europese richtlijnen op het gebied van natuur- en waterbescherming. Doelstelling van het onderzoek is om een gedegen overzicht te krijgen van de inhoud en concrete consequenties van de internationale en Europese beschermingsregimes voor de Waddenzee.

Published
2023

14. VP.24 T Cell-mediated immune response to dystrophin in Duchenne muscular dystrophy - A natural history study

Author

Anthony, K., primary, Ala, P., additional, Catapano, F., additional, Meng, J., additional, Domingos, J., additional, Perry, M., additional, Ricotti, V., additional, Maresh, K., additional, Phillips, L., additional, Straub, V., additional, Guglieri, M., additional, Servais, L., additional, Seferian, A., additional, De Lucia, S., additional, de Groot, I., additional, Krom, Y., additional, Verschuuren, J., additional, Niks, E., additional, Voit, T., additional, Morgan, J., additional, and Muntoni, F., additional

Published
2022
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16. FP.13 Diffusion-tensor MRI captures increased diameter and size heterogeneity of skeletal muscle fibres in Becker muscular dystrophy, as verified by histology

Author

Cameron, D., primary, Abbassi-Daloii, T., additional, Heezen, L., additional, van de Velde, N., additional, Koeks, Z., additional, Veeger, T., additional, Hooijmans, M., additional, Verschuuren, J., additional, van Putten, M., additional, Aartsma-Rus, A., additional, Raz, V., additional, Spitali, P., additional, Niks, E., additional, and Kan, H., additional

Published
2022
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17. Breakthrough SARS-CoV-2 infections with the delta (B.1.617.2) variant in vaccinated patients with immune-mediated inflammatory diseases using immunosuppressants: a substudy of two prospective cohort studies

Author

Boekel, L., Stalman, E.W., Wieske, L., Hooijberg, F., Dam, K.P.J. van, Besten, Y.R., Kummer, L.Y., Steenhuis, M., Kempen, Z.L.E. van, Killestein, J., Volkers, A.G., Tas, S.W., Kooi, A.J. van der, Raaphorst, J., Löwenberg, M., Takkenberg, R.B., d'Haens, G., Spuls, P.I., Bekkenk, M.W., Musters, A.H., Post, N.F., Bosma, A.L., Hilhorst, M.L., Vegting, Y., Bemelman, F.J., Voskuyl, A.E., Broens, B., Sanchez, A., Els, C. van, Wit, J. de, Rutgers, A., Leeuw, K. de, Horváth, B., Verschuuren, J., Ruiter, A.M. de, Ouwerkerk, L., Woude, D. van der, Allaart, C.F., Teng, Y.K.O., Paassen, P. van, Busch, M.H., Jallah, P.B.P., Brusse, E., Doorn, P.A. van, Baars, A.E., Hijnen, D.J., Schreurs, C.R.G., Pol, W.Ludo van der, Goedee, H.S., Vogelzang, E.H., Leeuw, M. de, Atiqi, S., Vollenhoven, R. van, Gerritsen, M, Horst-Bruinsma, I.E. van der, Lems, W.F., Nurmohamed, M.T., Boers, Maarten, Keijzer, Sofie, Keijser, J. de, Sandt, C., Boogaard, A., Cristianawati, O., Brinke, A. Ten, Verstegen, N.J., Zwinderman, K.A.H., Ham, S.M. van, Rispens, T., Kuijpers, T.W., Wolbink, G., Eftimov, F., Boekel, L., Stalman, E.W., Wieske, L., Hooijberg, F., Dam, K.P.J. van, Besten, Y.R., Kummer, L.Y., Steenhuis, M., Kempen, Z.L.E. van, Killestein, J., Volkers, A.G., Tas, S.W., Kooi, A.J. van der, Raaphorst, J., Löwenberg, M., Takkenberg, R.B., d'Haens, G., Spuls, P.I., Bekkenk, M.W., Musters, A.H., Post, N.F., Bosma, A.L., Hilhorst, M.L., Vegting, Y., Bemelman, F.J., Voskuyl, A.E., Broens, B., Sanchez, A., Els, C. van, Wit, J. de, Rutgers, A., Leeuw, K. de, Horváth, B., Verschuuren, J., Ruiter, A.M. de, Ouwerkerk, L., Woude, D. van der, Allaart, C.F., Teng, Y.K.O., Paassen, P. van, Busch, M.H., Jallah, P.B.P., Brusse, E., Doorn, P.A. van, Baars, A.E., Hijnen, D.J., Schreurs, C.R.G., Pol, W.Ludo van der, Goedee, H.S., Vogelzang, E.H., Leeuw, M. de, Atiqi, S., Vollenhoven, R. van, Gerritsen, M, Horst-Bruinsma, I.E. van der, Lems, W.F., Nurmohamed, M.T., Boers, Maarten, Keijzer, Sofie, Keijser, J. de, Sandt, C., Boogaard, A., Cristianawati, O., Brinke, A. Ten, Verstegen, N.J., Zwinderman, K.A.H., Ham, S.M. van, Rispens, T., Kuijpers, T.W., Wolbink, G., and Eftimov, F.

Abstract

Item does not contain fulltext, BACKGROUND: Concerns have been raised regarding the risks of SARS-CoV-2 breakthrough infections in vaccinated patients with immune-mediated inflammatory diseases treated with immunosuppressants, but clinical data on breakthrough infections are still scarce. The primary objective of this study was to compare the incidence and severity of SARS-CoV-2 breakthrough infections between patients with immune-mediated inflammatory diseases using immunosuppressants, and controls (patients with immune-mediated inflammatory diseases not taking immunosuppressants and healthy controls) who had received full COVID-19 vaccinations. The secondary objective was to explore determinants of breakthrough infections of the delta (B.1.617.2) variant of SARS-CoV-2, including humoral immune responses after vaccination. METHODS: In this substudy, we pooled data collected in two large ongoing prospective multicentre cohort studies conducted in the Netherlands (Target to-B! [T2B!] study and Amsterdam Rheumatology Center COVID [ARC-COVID] study). Both studies recruited adult patients (age ≥18 years) with immune-mediated inflammatory diseases and healthy controls. We sourced clinical data from standardised electronic case record forms, digital questionnaires, and medical files. We only included individuals who were vaccinated against SARS-CoV-2. For T2B!, participants were recruited between Feb 2 and Aug 1, 2021, and for ARC-COVID, participants were recruited between April 26, 2020, and March 1, 2021. In this study we assessed data on breakthrough infections collected between July 1 and Dec 15, 2021, a period in which the delta SARS-CoV-2 variant was the dominant variant in the Netherlands. We defined a SARS-CoV-2 breakthrough infection as a PCR-confirmed or antigen test-confirmed SARS-CoV-2 infection that occurred at least 14 days after vaccination. All breakthrough infections during this period were assumed to be due to the delta variant due to its dominance during the study period. We analysed

Published
2022

18. Humoral immune response after SARS-CoV-2 vaccination in patients with immune-mediated inflammatory diseases treated with immunosuppressive therapy - a Target to B! study

Author

Volkers, A., Wieske, L., van Dam, K., Steenhuis, M., Stalman, E., Kummer, L., van Kempen, Z., Killestein, J., Tas, S., Boekel, L., Wolbink, G., Takkenberg, B., Spuls, P., Bosma, A., Rutgers, B., Verschuuren, J., van Ouwerkerk, L., van der Woude, D., van Paassen, P., Busch, M., Brusse, E., Hijnen, D., ten Brinke, A., Verstegen, N., D'Haens, G., van Ham, M., Kuijpers, T., Rispens, T., Lowenberg, M., Eftimov, F., Neurology, and Dermatology

Subjects
SDG 3 - Good Health and Well-being
Published
2022

19. DOP27 Humoral immune response after SARS-CoV-2 vaccination in patients with immune-mediated inflammatory diseases treated with immunosuppressive therapy - a Target to B! study

Author

Volkers, A, primary, Wieske, L, additional, van Dam, K, additional, Steenhuis, M, additional, Stalman, E, additional, Kummer, L, additional, van Kempen, Z, additional, Killestein, J, additional, Tas, S, additional, Boekel, L, additional, Wolbink, G, additional, Takkenberg, B, additional, Spuls, P, additional, Bosma, A, additional, Rutgers, B, additional, Verschuuren, J, additional, van Ouwerkerk, L, additional, van der Woude, D, additional, van Paassen, P, additional, Busch, M, additional, Brusse, E, additional, Hijnen, D, additional, ten Brinke, A, additional, Verstegen, N, additional, D’Haens, G, additional, van Ham, M, additional, Kuijpers, T, additional, Rispens, T, additional, Löwenberg, M, additional, and Eftimov, F, additional

Published
2022
Full Text
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20. 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

21. Safety, efficacy, and tolerability of efgartigimod in patients with generalised myasthenia gravis (ADAPT) : a multicentre, randomised, placebo-controlled, phase 3 trial

Author

Howard, J.F., Bril, V., Vu, T., Karam, C., Perk, S., Margania, T., Murai, H., Bilinska, M., Shakarishvili, R., Smilowski, M., Guglietta, A., Ulrichts, P., Vangeneugden, T., Utsugisawa, K., Verschuuren, J., Mantegazza, R., and ADAPT Investigator Study Grp

Abstract

Background There is an unmet need for treatment options for generalised myasthenia gravis that are effective, targeted, well tolerated, and can be used in a broad population of patients. We aimed to assess the safety and efficacy of efgartigimod (ARGX-113), a human IgG1 antibody Fc fragment engineered to reduce pathogenic IgG autoantibody levels, in patients with generalised myasthenia gravis.Methods ADAPT was a randomised, double-blind, placebo-controlled, phase 3 trial done at 56 neuromuscular academic and community centres in 15 countries in North America, Europe, and Japan. Patients aged at least 18 years with generalised myasthenia gravis were eligible to participate in the study, regardless of anti-acetylcholine receptor antibody status, if they had a Myasthenia Gravis Activities of Daily Living (MG-ADL) score of at least 5 (>50% non-ocular), and were on a stable dose of at least one treatment for generalised myasthenia gravis. Patients were randomly assigned by interactive response technology (1:1) to efgartigimod (10 mg/kg) or matching placebo, administered as four infusions per cycle (one infusion per week), repeated as needed depending on clinical response no sooner than 8 weeks after initiation of the previous cycle. Patients, investigators, and clinical site staff were all masked to treatment allocation. The primary endpoint was proportion of acetylcholine receptor antibody-positive patients who were MG-ADL responders (>= 2-point MG-ADL improvement sustained for >= 4 weeks) in the first treatment cycle. The primary analysis was done in the modified intention-to-treat population of all acetylcholine receptor antibody-positive patients who had a valid baseline MG-ADL assessment and at least one post-baseline MG-ADL assessment. The safety analysis included all randomly assigned patients who received at least one dose or part dose of efgartigimod or placebo. This trial is registered at ClinicalTrials.gov (NCT03669588); an open-label extension is ongoing (ADAPT+, NCT03770403).Findings Between Sept 5, 2018, and Nov 26, 2019, 167 patients (84 in the efgartigimod group and 83 in the placebo group) were enrolled, randomly assigned, and treated. 129 (77%) were acetylcholine receptor antibody-positive. Of these patients, more of those in the efgartigimod group were MG-ADL responders (44 [68%] of 65) in cycle 1 than in the placebo group (19 [30%] of 64), with an odds ratio of 4.95 (95% CI 2.21-11.53, p

Published
2021

22. DMD/BMD – OUTCOME MEASURES

Author

Koeks, Z., primary, Hellebrekers, D., additional, vd Velde, N., additional, Alleman, I., additional, Spitali, P., additional, van Duyvenvoorde, H., additional, Verschuuren, J., additional, Hendriksen, J., additional, and Niks, E., additional

Published
2021
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24. DMD – CLINICAL CARE

Author

Houwen, S., primary, Heutinck, L., additional, Jansen, M., additional, Krom, Y., additional, Cup, E., additional, Hendriksen, J., additional, Willemsen, M., additional, Verschuuren, J., additional, Niks, E., additional, and De Groot, I., additional

Published
2021
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25. IMAGING

Author

Prins, A., primary, Naarding, K., additional, Holst van der, M., additional, Verschuuren, J., additional, Niks, E., additional, and Kan, H., additional

Published
2021
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26. DMD/BMD – OUTCOME MEASURES

Author

Meijer-Krom, Y., primary, van de Velde, N., additional, Ikelaar, N., additional, van der Holst, H., additional, Verschuuren, J., additional, Vroom, E., additional, Horemans, A., additional, Hendriksen, J., additional, Houwen-van Opstal, S., additional, de Groot, I., additional, Snijder, R., additional, and Niks, E., additional

Published
2021
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27. Original research: Second IVIg course in Guillain-Barré syndrome with poor prognosis: the non-randomised ISID study

Author

Verboon, C, van den Berg, B, Cornblath, Dr, Venema, E, Gorson, Kc, Lunn, Mp, Lingsma, H, Van den Bergh, P, Harbo, T, Bateman, K, Pereon, Y, Sindrup, Sh, Kusunoki, S, Miller, J, Islam, Z, Hartung, Hp, Chavada, G, Jacobs, Bc, Hughes, Rac, van Doorn PA, Ajroud-Driss S, IGOS Consortium., Antonini, G, Attarian, S, Barroso, Fa, Benedetti, L, Bertorini, Te, Brannagan, Th, Briani, C, Bhavaraju-Sanka, R, Butterworth, S, Casasnovas, C, Cavaletti, G, Chen, S, Claeys, Kg, Cosgrove, Js, Davidson, A, Dardiotis, E, Dornonville de la Cour, C, Faber, Cg, Feasby, Te, Fujioka, T, Galassi, G, Gilchrist, Jm, Goyal, Na, Granit, V, Gutiérrez-Gutiérrez, G, Hadden, Rdm, Holt, Jkl, Htut, M, Jericó Pascual, I, Karafiath, S, Katzberg, Hd, Kiers, L, Kieseier, Bc, Kimpinski, K, Kuwabara, S, Kwan, Jy, Ladha, Ss, Lawson, V, Lehmann, H, Manji, H, Marfia, Ga, Márquez Infante, C, Mattiazzi, Mg, Mcdermott, Cj, Monges, Ms, Morís de la Tassa, G, Nascimbene, C, Nobile Orazio, E, Nowak, Rj, Osei-Bonsu, M, Pardo Fernandez, J, Querol Gutierrez, L, Reisin, R, Rinaldi, S, Rojas-Marcos, I, Rudnicki, Sa, Schenone, A, Sedano Tous MJ, Shahrizaila, N, Sheikh, K, Silvestri, Nj, Sommer, Cl, Varrato, Jd, Verschuuren, J, Vytopil, Mv, Zhou, L, Bella, Ir, Bunschoten, C, Bürmann, J, Busby, M, Chao, Cc, Conti, Me, Dalakas, Mc, Van Damme, P, Doets, A, van Dijk GW, Dimachkie, Mm, Doppler, K, Echaniz-Laguna, A, Eftimov, F, Fazio, R, Fokke, C, Fulgenzi, Ea, Garssen, Mpj, Gijsbers, Cj, Gilhuis, J, Grapperon, A, Hsieh, St, Illa, I, Islam, B, Jellema, K, Kaida, K, Kokubun, N, Kolb, N, van Koningsveld, R, van der Kooi AJ, Kuitwaard, K, Landschoff Lassen, L, Leonhard, Se, Mandarakas, M, Martinez Hernandez, E, Mohammad, Qd, Pulley, M, Rajabally, Ya, Reddel, Sw, van der Ree, T, Roodbol, J, Sachs, Gm, Samijn, Jpa, Santoro, L, Stein, B, Vermeij, Fh, Visser, Lh, Willison, Hj, Wirtz, P, Zivkovich, Sa., Neurology, Public Health, Immunology, and ANS - Neuroinfection & -inflammation

Subjects
Adult, Male, second IVIg course, Pediatrics, medicine.medical_specialty, Poor prognosis, Time Factors, Guillain-Barre Syndrome, Original research, Drug Administration Schedule, Disease course, Disability Evaluation, 03 medical and health sciences, 0302 clinical medicine, hemic and lymphatic diseases, Clinical endpoint, Humans, Immunologic Factors, Medicine, In patient, Aged, treatment, Guillain-Barre syndrome, business.industry, Immunoglobulins, Intravenous, Middle Aged, poor prognosis, Prognosis, Guillain-Barré syndrome, medicine.disease, Psychiatry and Mental health, Treatment Outcome, Immunoglobulin G, 030220 oncology & carcinogenesis, Female, Surgery, Observational study, Neurology (clinical), business, 030217 neurology & neurosurgery
Abstract

ObjectiveTo compare disease course in patients with Guillain-Barré syndrome (GBS) with a poor prognosis who were treated with one or with two intravenous immunoglobulin (IVIg) courses.MethodsFrom the International GBS Outcome Study, we selected patients whose modified Erasmus GBS Outcome Score at week 1 predicted a poor prognosis. We compared those treated with one IVIg course to those treated with two IVIg courses. The primary endpoint, the GBS disability scale at 4 weeks, was assessed with multivariable ordinal regression.ResultsOf 237 eligible patients, 199 patients received a single IVIg course. Twenty patients received an ‘early’ second IVIg course (1–2 weeks after start of the first IVIg course) and 18 patients a ‘late’ second IVIg course (2–4 weeks after start of IVIg). At baseline and 1 week, those receiving two IVIg courses were more disabled than those receiving one course. Compared with the one course group, the adjusted OR for a better GBS disability score at 4 weeks was 0.70 (95%CI 0.16 to 3.04) for the early group and 0.66 (95%CI 0.18 to 2.50) for the late group. The secondary endpoints were not in favour of a second IVIg course.ConclusionsThis observational study did not show better outcomes after a second IVIg course in GBS with poor prognosis. The study was limited by small numbers and baseline imbalances. Lack of improvement was likely an incentive to start a second IVIg course. A prospective randomised trial is needed to evaluate whether a second IVIg course improves outcome in GBS.

Published
2019

31. International Consensus Guidance for Management of Myasthenia Gravis 2020 Update

Author

Narayanaswami, P, Sanders, DB, Wolfe, G, Benatar, M, Cea, G, Evoli, A, Gilhus, NE, Illa, I, Kuntz, NL, Massey, J, Melms, A, Murai, H, Nicolle, M, Palace, J, Richman, D, and Verschuuren, J

Subjects
education
Abstract

Objective To update the 2016 formal consensus-based guidance for the management of myasthenia gravis (MG) based on the latest evidence in the literature. Methods In October 2013, the Myasthenia Gravis Foundation of America appointed a Task Force to develop treatment guidance for MG, and a panel of 15 international experts was convened. The RAND/UCLA appropriateness method was used to develop consensus recommendations pertaining to 7 treatment topics. In February 2019, the international panel was reconvened with the addition of one member to represent South America. All previous recommendations were reviewed for currency, and new consensus recommendations were developed on topics that required inclusion or updates based on the recent literature. Up to 3 rounds of anonymous e-mail votes were used to reach consensus, with modifications to recommendations between rounds based on the panel input. A simple majority vote (80% of panel members voting "yes") was used to approve minor changes in grammar and syntax to improve clarity. Results The previous recommendations for thymectomy were updated. New recommendations were developed for the use of rituximab, eculizumab, and methotrexate as well as for the following topics: early immunosuppression in ocular MG and MG associated with immune checkpoint inhibitor treatment. Conclusion This updated formal consensus guidance of international MG experts, based on new evidence, provides recommendations to clinicians caring for patients with MG worldwide.

Published
2021

32. Occurrence of symptoms in different stages of Duchenne muscular dystrophy and their impact on social participation

Author

Houwen, S.L.S., Heutinck, L.B.M., Jansen, M., Krom, Y.D., Cup, E.H.C., Hendriksen, J.G.M., Willemsen, M.A.A.P., Verschuuren, J., Niks, E.H., Groot, I.J.M. de, Houwen, S.L.S., Heutinck, L.B.M., Jansen, M., Krom, Y.D., Cup, E.H.C., Hendriksen, J.G.M., Willemsen, M.A.A.P., Verschuuren, J., Niks, E.H., and Groot, I.J.M. de

Abstract

Item does not contain fulltext, INTRODUCTION/AIMS: As life expectancy improves for patients with Duchenne muscular dystrophy (DMD), new symptoms are likely to arise. This aims of this study are: (1) to explore the prevalence of a broad variety of symptoms in the various stages of DMD (with and without steroid use); (2) to explore the prevalence of common secondary diagnoses; and (3) to evaluate the social participation level of patients with DMD older than 16 y of age; and to explore correlations between social participation and symptoms. METHODS: A cross-sectional self-report questionnaire, including questions on functional level and health status, as well as a standardized participation scale was distributed among Dutch patients with DMD. RESULTS: Eighty-four male patients with a mean age of 22.0 (SD = 10.0) y were enrolled. The most prevalent and limiting symptoms were difficulty coughing (58%), coldness of hands (57%), contractures (51%), stiffness (49%), fatigue (40%), myalgia (38%), and low speech volume (33%). Prevalent secondary diagnoses included cardiac disease (14%), neurobehavioral diagnosis (13%), low blood pressure (13%), and arthrosis (5%). Social participation correlated negatively with coldness of hands (r = - .29; P < .03), decreased intelligibility (r = - .40; P < .003), and chewing problems (r = - .33; P < .02). DISCUSSION: The prevalence of a broad spectrum of symptoms and secondary diagnoses is high in patients with DMD, and some of these symptoms are correlated with social participation. Growing awareness of new symptoms and secondary diagnoses among patients, caregivers, and professionals can enhance their recognition, possibly facilitating prevention and early treatment.

Published
2021

33. Verdroging in Brabant : Een Europeesrechtelijk Perspectief

Author

Bastmeijer, K., Rijswick, M. van, Verschuuren, J., Bastmeijer, K., Rijswick, M. van, and Verschuuren, J.

Abstract

Verdroging is een probleem dat in Nederland en Noord-Brabant al meer dan 30 jaar wordt waargenomen en ervaren. Een recent onderzoek door Deltares e.a. (hierna: ‘Onderzoek watervraag natuur 2020’ maakt duidelijk dat deze problematiek in Noord-Brabant extra zorgelijk is vanwege een aanzienlijke onbalans tussen aanvulling en onttrekking van grondwater. Met dat onderzoek is ook duidelijk geworden dat momenteel aan de ecologische ‘watervraag’ van de Brabantse natuur niet wordt voldaan. Tegen deze achtergrond geeft dit onderzoek – uitgevoerd in opdracht van Brabantse samenwerkende natuurorganisaties - inzicht in de Europeesrechtelijke verplichtingen die relevant zijn voor verdrogingsbestrijding. Het gaat daarbij primair om het instrumentarium op grond van de EU Vogelrichtlijn en Habitatrichtlijn (het Natura 2000-regime voor gebieden en soortenbescherming), de Kaderrichtlijn Water en het EU klimaatadaptatierecht. Op basis van dit inzicht in verplichtingen wordt vervolgens een grove inschatting gemaakt van de mate waarin de huidige inzet van provincie en waterschappen aan die EU-rechtelijke verplichtingen en verboden voldoet en wat de consequenties zijn van mogelijk strijdigheden of spanningen voor bestaande en nieuwe grondwateronttrekkingen. Tot slot wordt een korte reflectie gegeven op het ontwerp Regionaal Water en Bodem Programma 2022-2027 van de Provincie Noord-Brabant.

Published
2021

34. International Consensus Guidance for Management of Myasthenia Gravis: 2020 Update

Author

Narayanaswami, P., Sanders, D. B., Wolfe, G., Benatar, M., Cea, G., Evoli Stampanoni-B, Amelia, Gilhus, N. E., Illa, I., Kuntz, N. L., Massey, J., Melms, A., Murai, H., Nicolle, M., Palace, J., Richman, D., Verschuuren, J., Evoli A. (ORCID:0000-0003-0282-8787), Narayanaswami, P., Sanders, D. B., Wolfe, G., Benatar, M., Cea, G., Evoli Stampanoni-B, Amelia, Gilhus, N. E., Illa, I., Kuntz, N. L., Massey, J., Melms, A., Murai, H., Nicolle, M., Palace, J., Richman, D., Verschuuren, J., and Evoli A. (ORCID:0000-0003-0282-8787)

Abstract

OBJECTIVE: To update the 2016 formal consensus-based guidance for the management of myasthenia gravis (MG) based on the latest evidence in the literature. METHODS: In October 2013, the Myasthenia Gravis Foundation of America appointed a Task Force to develop treatment guidance for MG, and a panel of 15 international experts was convened. The RAND/UCLA appropriateness method was used to develop consensus recommendations pertaining to 7 treatment topics. In February 2019, the international panel was reconvened with the addition of one member to represent South America. All previous recommendations were reviewed for currency, and new consensus recommendations were developed on topics that required inclusion or updates based on the recent literature. Up to 3 rounds of anonymous e-mail votes were used to reach consensus, with modifications to recommendations between rounds based on the panel input. A simple majority vote (80% of panel members voting "yes") was used to approve minor changes in grammar and syntax to improve clarity. RESULTS: The previous recommendations for thymectomy were updated. New recommendations were developed for the use of rituximab, eculizumab, and methotrexate as well as for the following topics: early immunosuppression in ocular MG and MG associated with immune checkpoint inhibitor treatment. CONCLUSION: This updated formal consensus guidance of international MG experts, based on new evidence, provides recommendations to clinicians caring for patients with MG worldwide.

Published
2021

35. International Guillain-Barré Syndrome Outcome Study

Author

Jacobs, B, van den Berg, B, Verboon, C, Chavada, G, Cornblath, D, Gorson, K, Harbo, T, Hartung, H, Hughes, R, Kusunoki, S, van Doorn, P, Willison, H, Consortium, I, van Woerkom, M, Roodbol, J, Reisin, R, Reddel, S, Islam, Z, Islam, B, Mohammad, Q, van den Bergh, P, Feasby, T, Wang, Y, Péréon, Y, Lehmann, H, Dardiotis, E, Nobile Orazio, E, Shahrizaila, N, Bateman, K, Illa, I, Querol, L, Hsieh, S, Davidson, A, Addington, J, Ajroud Driss, S, Andersen, H, Antonini, G, Attarian, S, Badrising, U, Barroso, F, Benedetti, L, Beronio, A, Bianco, M, Binda, D, Briani, C, Bürmann, J, Bella, I, Bertorini, T, Bhavaraju Sanka, R, Brannagan, T, Busby, M, Butterworth, S, Campagnolo, M, Casasnovas, C, Cavaletti, G, Chao, C, Chen, S, Chetty, S, Claeys, K, Cohen, J, Conti, M, Cosgrove, J, Dalakas, M, Dimachkie, M, Dillmann, U, Domínguez González, C, Doppler, K, Dornonville de la Cour, C, Echaniz Laguna, A, Eftimov, F, Faber, C, Fazio, R, Fokke, C, Fujioka, T, Fulgenzi, E, Galassi, G, Garcia, T, Garnero, M, Garssen, M, Gijsbers, C, Gilchrist, J, Gilhuis, H, Goldstein, J, Goyal, N, Granit, V, Grapperon, A, Gutiérrez Gutiérrez, G, Gutmann, L, Hadden, R, Holbech, J, Holt, J, Homedes Pedret, C, Htut, M, Jellema, K, Jericó Pascual, I, 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, Landschoff Lassen, L, Lawson, V, Ledingham, D, Léon Cejas, L, Luciano, C, Lucy, S, Lunn, M, Magot, A, Manji, H, Marchesoni, C, Marfia, Ga, Márquez Infante, C, Martinez Hernandez, E, Mataluni, G, Mattiazi, M, Mcdermott, C, Meekins, G, Miller, J, Monges, M, Montero, M, Morís de la Tassa, G, Nascimbene, C, Neumann, C, Nowak, R, Orizaola Balaguer, P, Osei Bonsu, M, Pan, E, Pardo Fernandez, J, Pasnoor, M, Pulley, M, Rajabally, Y, Rinaldi, S, Ritter, C, Roberts, R, Rojas Marcos, I, Rudnicki, S, Sachs, G, Samijn, J, Santoro, L, Saperstein, D, Savransky, A, Schneider, H, Schenone, A, Sedano Tous, M, Sekiguchi, Y, Sheikh, K, Silvestri, N, Sindrup, S, Sommer, C, Stein, B, Stino, A, Spyropoulos, A, Srinivasan, J, Suzuki, H, Taylor, S, Tankisi, H, Tigner, D, Twydell, P, Valzania, F, van Damme, P, van der Kooi, A, van Dijk, G, van der Ree, T, van Koningsveld, R, Varrato, J, Vermeij, F, Verschuuren, J, Visser, L, Vytopil, M, Waheed, W, Wilken, M, Wilkerson, C, Wirtz, P, Yamagishi, Y, Yiu, E, Zhou, L, Zivkovic, S, Immunology, Neurology, Jacobs, B, van den Berg, B, Verboon, C, Chavada, G, Cornblath, D, Gorson, K, Harbo, T, Hartung, H, Hughes, R, Kusunoki, S, van Doorn, P, Willison, H, van Woerkom, M, Roodbol, J, Reisin, R, Reddel, S, Islam, Z, Islam, B, Mohammad, Q, van den Bergh, P, Feasby, T, Wang, Y, Pã©rã©on, Y, Lehmann, H, Dardiotis, E, Nobile Orazio, E, Shahrizaila, N, Bateman, K, Illa, I, Querol, L, Hsieh, S, Davidson, A, Addington, J, Ajroud Driss, S, Andersen, H, Antonini, G, Attarian, S, Badrising, U, Barroso, F, Benedetti, L, Beronio, A, Bianco, M, Binda, D, Briani, C, Bã¼rmann, J, Bella, I, Bertorini, T, Bhavaraju Sanka, R, Brannagan, T, Busby, M, Butterworth, S, Campagnolo, M, Casasnovas, C, Cavaletti, G, Chao, C, Chen, S, Chetty, S, Claeys, K, Cohen, J, Conti, M, Cosgrove, J, Dalakas, M, Dimachkie, M, Dillmann, U, Domínguez González, C, Doppler, K, Dornonville de la Cour, C, Echaniz Laguna, A, Eftimov, F, Faber, C, Fazio, R, Fokke, C, Fujioka, T, Fulgenzi, E, Galassi, G, Garcia, T, Garnero, M, Garssen, M, Gijsbers, C, Gilchrist, J, Gilhuis, H, Goldstein, J, Goyal, N, Granit, V, Grapperon, A, Gutiérrez Gutiérrez, G, Gutmann, L, Hadden, R, Holbech, J, Holt, J, Homedes Pedret, C, Htut, M, Jellema, K, Jericó Pascual, I, 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, Landschoff Lassen, L, Lawson, V, Ledingham, D, Léon Cejas, L, Luciano, C, Lucy, S, Lunn, M, Magot, A, Manji, H, Marchesoni, C, Marfia, G, Márquez Infante, C, Martinez Hernandez, E, Mataluni, G, Mattiazi, M, Mcdermott, C, Meekins, G, Miller, J, Monges, M, Montero, M, Morís de la Tassa, G, Nascimbene, C, Neumann, C, Nowak, R, Orizaola Balaguer, P, Osei Bonsu, M, Pan, E, Pardo Fernandez, J, Pasnoor, M, Pulley, M, Rajabally, Y, Rinaldi, S, Ritter, C, Roberts, R, Rojas Marcos, I, Rudnicki, S, Sachs, G, Samijn, J, Santoro, L, Saperstein, D, Savransky, A, Schneider, H, Schenone, A, Sedano Tous, M, Sekiguchi, Y, Sheikh, K, Silvestri, N, Sindrup, S, Sommer, C, Stein, B, Stino, A, Spyropoulos, A, Srinivasan, J, Suzuki, H, Taylor, S, Tankisi, H, Tigner, D, Twydell, P, Valzania, F, van Damme, P, van der Kooi, A, van Dijk, G, van der Ree, T, van Koningsveld, R, Varrato, J, Vermeij, F, Verschuuren, J, Visser, L, Vytopil, M, Waheed, W, Wilken, M, Wilkerson, C, Wirtz, P, Yamagishi, Y, Yiu, E, Zhou, L, Zivkovic, S, Rehabilitation medicine, Internal medicine, and ANS - Neuroinfection & -inflammation

Subjects
Male, Pediatrics, PROGNOSIS, diagnosis, International Cooperation, Guillain-Barré syndrome, biomarkers, outcome, prognosis, treatment, Guillain-Barre syndrome, Guillain-Barré syndrome, Neuroscience (all), Neurology (clinical), Cohort Studies, 0302 clinical medicine, Epidemiology, Outcome Assessment, Health Care, INFECTION, CRITERIA, 030212 general & internal medicine, General Neuroscience, Biobank, Observational Studies as Topic, diagnosi, Disease Progression, biomarker, Female, Settore MED/26 - Neurologia, medicine.symptom, prognosi, Cohort study, medicine.medical_specialty, Weakness, Guillain-Barre Syndrome, CLASSIFICATION, VALIDATION, 03 medical and health sciences, medicine, Humans, INTRAVENOUS IMMUNOGLOBULIN, Protocol (science), business.industry, Polyradiculoneuropathy, medicine.disease, ANTIBODIES, Observational study, business, COLLECTION, 030217 neurology & neurosurgery
Abstract

Guillain-Barré syndrome (GBS) is an acute polyradiculoneuropathy with a highly variable clinical presentation, course, and outcome. The factors that determine the clinical variation of GBS are poorly understood which complicates the care and treatment of individual patients. The protocol of the ongoing International GBS Outcome Study (IGOS), a prospective, observational, multicenter cohort study that aims to identify the clinical and biological determinants and predictors of disease onset, subtype, course and outcome of GBS is presented here. Patients fulfilling the diagnostic criteria for GBS, regardless of age, disease severity, variant forms, or treatment, can participate if included within 2 weeks after onset of weakness. Information about demography, preceding infections, clinical features, diagnostic findings, treatment, course, and outcome is collected. In addition, cerebrospinal fluid and serial blood samples for serum and DNA is collected at standard time points. The original aim was to include at least 1,000 patients with a follow-up of 1-3 years. Data are collected via a web-based data entry system and stored anonymously. IGOS started in May 2012 and by January 2017 included more than 1,400 participants from 143 active centers in 19 countries across 5 continents. The IGOS data/biobank is available for research projects conducted by expertise groups focusing on specific topics including epidemiology, diagnostic criteria, clinimetrics, electrophysiology, antecedent events, antibodies, genetics, prognostic modeling, treatment effects, and long-term outcome of GBS. The IGOS will help to standardize the international collection of data and biosamples for future research of GBS.

Published
2017

40. 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

42. Second IVIg course in Guillain-Barré syndrome with poor prognosis. The non-randomised ISID study

Author

Verboon, C., Van Den Berg, B., Cornblath, D. R., Venema, E., Gorson, K. C., Lunn, M. P., Lingsma, H., Van Den Bergh, P., Harbo, T., Bateman, K., Pereon, Y., Sindrup, So. H., Kusunoki, S., Miller, J., Islam, Z., Hartung, H. -P., Chavada, G., Jacobs, B. C., Hughes, R. A. C., Addington, Van Doorn P. A. J. M., MD (University of Virginia, Charlottesville, USA), on October 7, S. Consortia. Protected by copyright., Downloaded from 8 Verboon C, 2019 at Uppsala Universitet BIBSAM http://jnnp. bmj. com/ J Neurol Neurosurg Psychiatry: first published as 10. 1136/jnnp-2019-321496 on 5 October 2019., J Neurol Neurosurg Psychiatry 2019, et al., 1136/jnnp-2019-321496 Neuromuscular Ajroud-Driss, 0:1–9. doi:10., MD (Northwestern University Feinberg, Chicago, USA), Antonini, G., MD (Mental Health and Sensory Organs (NESMOS), Sapienza, University, Sant’Andrea, Hospital, Rome, Italy), Attarian, S., PhD (CHU Timone, Marseille, France), Barroso, F. A., MD (Instituto de Investigaciones Neurológicas Raúl Carrea, Fleni, Buenos, Aires, Argentina), Benedetti, L., PhD (Ospedale Sant’ Andrea La Spezia, Spezia, La, Italy), Bertorini, T. E., MD (The University of Tennessee Health Science Center (UTHSC), Memphis, USA), Brannagan, T. H., MD (Columbia University, New York City, USA), Briani, C., MD (University of Padova, Padova, Italy), Bhavaraju-Sanka, R., MD (University Hospital/University of Texas Health Science Center, San Antonio Texas, Butterworth, S., MD (Pinderfields Hospital, Wakefield, UK), Casasnovas, C., Ciberer, PhD (Bellvitge University Hospital – IDIBELL Neurometabolic Diseases Group., Barcelona, Spain), Cavaletti, G., MD (University Milano-Bicocca, Monza, Italy), Chen, S., Phd, (Rutgers, Robert Wood Johnson University Hospital, New, Brunswick, Claeys, K. G., University Hospitals Leuven, PhD (1., Leuven, Belgium, KU Leuven, 2., Leuven, Belgium), Cosgrove, J. S., MD (Leeds General Infirmary, Leeds, UK), Davidson, A., MD (University of Glasgow, Glasgow, UK), Dardiotis, E., MD (University of Thessaly, Hospital of Larissa, Larissa, Greece), Dornonville de la Cour, C., MD (National Hospital Copenhagen, Copenhagen, Denmark), Faber, C. G., PhD (Maastricht University Medical Centre, Maastricht, The, Netherlands), Feasby, T. E., MD (University of Calgary, Calgary, Canada), Fujioka, T., MD (Toho University Medical Center, Tokyo, Japan), Galassi, G., MD (University Hospital of Modena, Modena, Italy), Gilchrist, J. M., MD (Soulthern Illinois University School of Medicine, Springfield, USA), Goyal, N. A., MD (University of California, Irvine, USA), Granit, V., MD (Montefiore Medical, Center, New, York, Gutiérrez-Gutiérrez, G., MD (Hospital Universitario Infanta Sofia, San, Sebastian, Spain), Hadden, R. D. M., PhD (King’s College Hospital, London, UK), Holt, J. K. L., Phd, FRCP (The Walton Centre, Liverpool, UK), Htut, M., George’s Hospital, MD (St., Jericó Pascual, I., PhD (Complejo Hospitalario de Navarra, Pamplona, Spain), Karafiath, S., MD (University of Utah School of Medicine, Salt Lake City, Katzberg, H. D., MD (University of Toronto, Toronto, Canada), Kiers, L., MD (University of Melbourne, Royal Melbourne Hospital, Parkville, Australia), Kieseier, B. C., MD (Heinrich Heine University, Düsseldorf, Germany), Kimpinski, K., MD (University Hospital, Lhsc, London-Ontario, Canada), Kuwabara, S., PhD (Chiba University, Chiba, Japan), Kwan, J. Y., MD (University of Maryland School of Medicine, Baltimore, USA), Ladha, S. S., MD (Barrow Neurology Clinics, Phoenix, Arizona, Lawson, V., MD (Wexner Medical Center at The Ohio State University, Columbus, USA), Lehmann, H., PhD (University Hospital of Cologne, Universitätsklinikum, Köln, Cologne, Germany), Manji, H., FRCP (Ipswich Hospital, Ipswich, UK), Marfia, G. A., MD (Neurological Clinic, Policlinico Tor Vergata, Márquez Infante, C., MD (Hospital Universitario Virgen del Rocio, Seville, Spain), Mattiazzi, M. G., MD (Hospital Militar Central, Mcdermott, C. J., MD (Royal Hallamshire Hospital, Nihr, Clinical, Sheffield, UK), Monges, M. S., Garrahan, MD (Hospital de Pediatría J. P., Morís de la Tassa, G., MD (Hospital Universitario Central de Asturias, Asturias, Spain), Nascimbene, C., PhD (Luigi Sacco Hospital, Milan, Italy), Nobile Orazio, E., PhD (Milan University, Humanitas Clinicala and Research Institute Milan, Nowak, R. J., MD (Yale University School of Medicine, New, Haven, Osei-Bonsu (James Cook University Hospital, M., Middlesbrough, UK), Pardo Fernandez (Hospital Clínico de Santiago, J., Santiago de Compostela (A Coruña), Querol Gutierrez, L., PhD (Hospital de la Santa Creu, i Sant Pau, Universitat Autònoma de Barcelona, Reisin (Hospital Britanico, R., Rinaldi, S., Mbchb, Roberts, PhD (University of Oxford R. C., MD (Addenbrooke’s Hospital Cambridge, Cambridge, UK), Rojas-Marcos, I., MD (Hospital Univesitario Reina Sofia, Cordoba, Spain), Rudnicki, S. A., MD (University of Arkansas, Fayetteville, USA), Schenone, A., Department of Neurosciences, PhD (1., Rehabilitation, Ophthalmology, Genetics and Maternal and Infantile Sciences (DINOGMI), University of Genova, Genova, IRCCS Policlinico San Martino, Italy 2., Genova, Italy), Sedano Tous, M. J., MD (Hospital Universitario Marques de Valdecilla, Santander, Cantabria, Shahrizaila, N., MD (Neurology Unit, Department of Medicine, Faculty of Medicine, University of Malaya, Malaya), Sheikh, K., PhD (The University of Texas Health Science Center at Houston, Houston, USA), Silvestri, N. J., MD (Buffalo General Medical Center, Buffalo, Ny, Sommer, C. L., MD (Universitätsklinikum Würzburg, Würzburg, Germany), Varrato, J. D., DO (Lehigh Valley Health Network, Allentown, USA), Verschuuren, J., PhD (Leiden University Medical Centre, Leiden, Vytopil, M. V., Waheed, PhD (Tufts University School of Medicine Lahey Hospital W., MD (University of Vermont Medical Center, Burlington, USA), Zhou, L., PhD (Icahn School of Medicine at Mount Sinai, Badrising, USA). Other collaborators were:U. A., Bella, I. R., MD (University of Mass Medical School, Worcester, USA), Bunschoten, C., PhD candidate (Erasmus University Medical Centre, Rotterdam, Bürmann, J., Universitätsklinikum des Saarlandes, Homburg, Germany), Busby, M., Bradford, UK), Chao, C. C., PhD (National Taiwan University Hospital, Taipei, Taiwan), Conti, M. E., MD (University Hospital Clinicas, Dalakas, M. C., Thomas Jefferson University, MD (1., Philadelphia, Usa, National and Kapodistrian University of Athens, 2., Athens, Greece), Van Damme, P., PhD (University Hospital Leuven, Doets, A., van Dijk, G. W., MD (Canisius Wilhelmina Hospital, Nijmegen, Dimachkie, M. M., MD (University of Kansas Medical Center, Kansas, City, Doppler, K., Echaniz-Laguna, A., MD (Hopital de Hautepierre, Strasbourgh, France), Eftimov, F., PhD (Amsterdam University Medical Centre, Amsterdam, Fazio, R., MD (Scientific Institute San Raffaele, Fokke, C., MD (Gelre Hospital, Zutphen and Apeldoorn, Fulgenzi, E. A., MD (Hospital Cesar Milstein Buenos Aires, Garssen, M. P. J., PhD (Jeroen Bosch Hospital, Hertogenbosch, ’S, Zaltbommel and Drunen, Gijsbers, C. J., MD (Vlietland Hospital, Schiedam, Gilhuis, J., PhD (Reinier de Graaf Gasthuis, Delft, Grapperon, A., MD (CHU Timone, Hsieh, S. T., Illa, I., Islam, B., PhD (International Centre for Diarrhoeal Disease Research, Bangladesh, (icddr, Dhaka, b), Bangladesh), Jellema, K., PhD (Haaglanden Medisch Centrum, The, Hague, Kaida, K., PhD (National Defense Medical College, Saitama, Japan), Kokubun, N., MD (Dokkyo Medical University, Tochigi, Japan), Kolb, N., MD (University of Vermont, Burlington, Vt, van Koningsveld, R., PhD (Elkerliek Hospital, Helmond and Deurne, van der Kooi, A. J., Kuitwaard, K., PhD (Albert Schweitzer Hospital, Dordrecht, Landschoff Lassen, L., MD (Glostrup Hospital, Glostrup, Denmark), Leonhard, S. E., Mandarakas, M., PhD (Erasmus University Medical Centre, Martinez Hernandez, E., MD (Institut d’Investigacions Biomèdiques August Pi, i Sunyer (IDIBAPS), Hospital, Clinic, Mohammad, Q. D., PhD (National Institute of Neurosciences and Hospital, Dhaka, Bangladesh), Pulley, M., MD (University of Florida, Jacksonville, USA), Rajabally, Y. A., PhD (Queen Elizabeth Hospital, Birmingham, UK), Reddel, S. W., PhD (Concord Repatriation General Hospital, Sydney, Australia), van der Ree, T., (Westfriesgasthuis, Md, Hoorn, Roodbol, J., Sachs, G. M., MD (University of Rhode Island, Providence, USA), Samijn, J. P. A., PhD (Maasstad Hospital, Santoro, L., PhD (University Federico II, Napels, Italy), Stein, B., Joseph’s Regional Medical Center, MD (St., Paterson, USA), Vermeij, F. H., MD (Franciscus Gasthuis, Visser, L. H., PhD (Elisabeth-TweeSteden Hospital, Tilburg and Waalwijk, Willison, H. J., PhD (University of Glasgow, Wirtz, P., Phd, (HagaZiekenhuis, Zivkovich, S. A., PhD (University of Pittsburgh Medical Center, and Pittsburgh, USA).

Subjects
treatment, disability evaluation, drug administration schedule, adult, guillain-barré syndrome, poor prognosis, second ivig course, aged, female, guillain-barre syndrome, humans, immunoglobulin g, immunoglobulins, intravenous, immunologic factors, male, middle aged, prognosis, time factors, treatment outcome
Published
2020

43. Novel free-circulating and extracellular vesicle-derived miRNAs dysregulated in Duchenne muscular dystrophy

Author

Catapano, F., Scaglioni, D., Maresh, K., Ala, P., Domingos, J., Selby, V., Ricotti, V., Phillips, L., Servais, L., Seferian, A., Groot, I.J. de, Krom, Y.D., Voit, T., Verschuuren, J., Niks, E.H., Straub, V., Morgan, J., Muntoni, F., Catapano, F., Scaglioni, D., Maresh, K., Ala, P., Domingos, J., Selby, V., Ricotti, V., Phillips, L., Servais, L., Seferian, A., Groot, I.J. de, Krom, Y.D., Voit, T., Verschuuren, J., Niks, E.H., Straub, V., Morgan, J., and Muntoni, F.

Abstract

Item does not contain fulltext, Aim: To perform cross-sectional and longitudinal miRNA profiling in plasma from Duchenne muscular dystrophy (DMD) subjects and find non-invasive biomarkers in DMD. Subjects/materials & methods: Plasma was collected from 14 age and sex matched controls and 46 DMD subjects. Free-circulating and extracellular vesicle (EV)-derived miRNA expression was measured by RT-qPCR. Results: Free-circulating and EVs derived miR-29c-3p and miR-133a-3p are dysregulated in DMD subjects. Free-circulating and EV-derived miR-29c-3p are reduced in DMD subjects undergoing daily corticosteroid treatment. Free-circulating miR-1-3p and miR-122-5p are longitudinally upregulated in ambulant DMD subjects. Conclusion: We detected novel free-circulating and EV-derived dysregulated miRNAs in plasma from DMD subjects and characterized the longitudinal profile of free-circulating miRNA on plasma from DMD subjects.

Published
2020

45. Minimal manifestation status and prednisone withdrawal in the MGTX trial

Author

Lee, I., Kuo, H. -C., Aban, I. B., Cutter, G. R., McPherson, T., Kaminski, H. J., Sussman, J., Strobel, P., Oger, J., Cea, G., Heckmann, J. M., Evoli, A., Nix, W., Ciafaloni, E., Antonini, G., Witoonpanich, R., King, J. O., Beydoun, S. R., Chalk, C. H., Barboi, A. C., Amato, A. A., Shaibani, A. I., Katirji, B., Lecky, B. R. F., Buckley, C., Vincent, A., Dias-Tosta, E., Yoshikawa, H., Waddington-Cruz, M., Pulley, M. T., Rivner, M. H., Kostera-Pruszczyk, A., Pascuzzi, R. M., Jackson, C. E., Verschuuren, J. J. G., Massey, J. M., Kissel, J. T., Werneck, L. C., Benatar, M., Barohn, R. J., Tandan, R., Mozaffar, T., Conwit, R., Minisman, G., Sonett, J. R., Wolfe, G. I., Evoli A. (ORCID:0000-0003-0282-8787), Lee, I., Kuo, H. -C., Aban, I. B., Cutter, G. R., McPherson, T., Kaminski, H. J., Sussman, J., Strobel, P., Oger, J., Cea, G., Heckmann, J. M., Evoli, A., Nix, W., Ciafaloni, E., Antonini, G., Witoonpanich, R., King, J. O., Beydoun, S. R., Chalk, C. H., Barboi, A. C., Amato, A. A., Shaibani, A. I., Katirji, B., Lecky, B. R. F., Buckley, C., Vincent, A., Dias-Tosta, E., Yoshikawa, H., Waddington-Cruz, M., Pulley, M. T., Rivner, M. H., Kostera-Pruszczyk, A., Pascuzzi, R. M., Jackson, C. E., Verschuuren, J. J. G., Massey, J. M., Kissel, J. T., Werneck, L. C., Benatar, M., Barohn, R. J., Tandan, R., Mozaffar, T., Conwit, R., Minisman, G., Sonett, J. R., Wolfe, G. I., and Evoli A. (ORCID:0000-0003-0282-8787)

Abstract

OBJECTIVE: To examine whether sustained minimal manifestation status (MMS) with complete withdrawal of prednisone is better achieved in thymectomized patients with myasthenia gravis (MG). METHODS: This study is a post hoc analysis of data from a randomized trial of thymectomy in MG (Thymectomy Trial in Non-Thymomatous Myasthenia Gravis Patients Receiving Prednisone Therapy [MGTX]). MGTX was a multicenter, randomized, rater-blinded 3-year trial that was followed by a voluntary 2-year extension for patients with acetylcholine receptor (AChR) antibody-positive MG without thymoma. Patients were randomized 1:1 to thymectomy plus prednisone vs prednisone alone. Participants were age 18-65 years at enrollment with disease duration less than 5 years. All patients received oral prednisone titrated up to 100 mg on alternate days until they achieved MMS, which prompted a standardized prednisone taper as long as MMS was maintained. The achievement rate of sustained MMS (no symptoms of MG for 6 months) with complete withdrawal of prednisone was compared between the thymectomy plus prednisone and prednisone alone groups. RESULTS: Patients with MG in the thymectomy plus prednisone group achieved sustained MMS with complete withdrawal of prednisone more frequently (64% vs 38%) and quickly compared to the prednisone alone group (median time 30 months vs no median time achieved, p < 0.001) over the 5-year study period. Prednisone-associated adverse symptoms were more frequent in the prednisone alone group and distress level increased with higher doses of prednisone. CONCLUSIONS: Thymectomy benefits patients with MG by increasing the likelihood of achieving sustained MMS with complete withdrawal of prednisone. CLINICALTRIALSGOV IDENTIFIER: NCT00294658. CLASSIFICATION OF EVIDENCE: This study provides Class II evidence that for patients with generalized MG with AChR antibody, those receiving thymectomy plus prednisone are more likely to attain sustained MMS and complete prednisone wi

Published
2020

47. Screening for Tumours in Paraneoplastic Syndromes

Author

Titulaer, M. J., primary, Soffietti, R., additional, Dalmau, J., additional, Gilhus, N. E., additional, Giometto, B., additional, Graus, F., additional, Grisold, W., additional, Honnorat, J., additional, Sillevis Smitt, P. A. E., additional, Tanasescu, R., additional, Vedeler, C. A., additional, Voltz, R., additional, and Verschuuren, J. J. G. M., additional

Published
2011
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49. Autoimmune Neuromuscular Transmission Disorders

Author

Skeie, G. O., primary, Apostolski, S., additional, Evoli, A., additional, Gilhus, N. E., additional, Illa, I., additional, Harms, L., additional, Hilton-Jones, D., additional, Melms, A., additional, Verschuuren, J., additional, and Westgaard Horge, H., additional

Published
2010
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50. Paraneoplastic Neurological Syndromes

Author

Vedeler, C. A., primary, Antoine, J. C., additional, Giometto, B., additional, Graus, F., additional, Grisold, W., additional, Honnorat, J., additional, Sillevis Smitt, P. A. E., additional, Verschuuren, J. J. G. M., additional, and Voltz, R., additional

Published
2010
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