Mapping the differences in care for 5,000 Spinal Muscular Atrophy patients, a survey of 24 national registries in North America, Australasia and Europe

C.L. Bladen; R. Thompson; J.M. Jackson; C. Garland; C. Wegel; A. Ambrosini; P. Pisano; M.C. Walter; O. Schreiber; A. Lusakowska; M. Jedrzejowska; A. Kostera-Pruszczyk; L. Van Der Pol; R.I. Wadman; O. Gredal; A. Karaduman; H. Topaloglu; O. Yilmaz; V. Matyushenko; V.M. Rasic; A. Kosac; V. Karcagi; M. Garami; A. Herczegfalvi; S. Monges; A. Moresco; L. Chertkoff; T. Chamova; V. Guergueltcheva; N. Butoianu; D. Craiu; L. Korngut; C. Campbell; J. Haberlova; J. Strenkova; M. Alejandro; A. Jimenez; G.G. Ortiz; G.V.G. Enriquez; M. Rodrigues; R. Roxburgh; H. Dawkins; L. Youngs; J. Lahdetie; N. Angelkova; P. Saugier-Veber; J.-M. Cuisset; C. Bloetzer; P.-Y. Jeannet; A. Klein; A. Nascimento; E. Tizzano; D. Salgado; E. Mercuri; T. Sejersen; J. Kirschner; K. Rafferty; V. Straub; K. Bushby; J. Verschuuren; C. Beroud; H. Lochmüller

doi:10.1007/s00415-013-7154-1

Mapping the differences in care for 5,000 Spinal Muscular Atrophy patients, a survey of 24 national registries in North America, Australasia and Europe

C.L. Bladen, R. Thompson, J.M. Jackson, C. Garland, C. Wegel, A. Ambrosini, P. Pisano, M.C. Walter, O. Schreiber, A. Lusakowska, M. Jedrzejowska, A. Kostera-Pruszczyk, L. Van Der Pol, R.I. Wadman, O. Gredal, A. Karaduman, H. Topaloglu, O. Yilmaz, V. Matyushenko, V.M. RasicA. Kosac, V. Karcagi, M. Garami, A. Herczegfalvi, S. Monges, A. Moresco, L. Chertkoff, T. Chamova, V. Guergueltcheva, N. Butoianu, D. Craiu, L. Korngut, C. Campbell, J. Haberlova, J. Strenkova, M. Alejandro, A. Jimenez, G.G. Ortiz, G.V.G. Enriquez, M. Rodrigues, R. Roxburgh, H. Dawkins, L. Youngs, J. Lahdetie, N. Angelkova, P. Saugier-Veber, J.-M. Cuisset, C. Bloetzer, P.-Y. Jeannet, A. Klein, A. Nascimento, E. Tizzano, D. Salgado, E. Mercuri, T. Sejersen, J. Kirschner, K. Rafferty, V. Straub, K. Bushby, J. Verschuuren, C. Beroud, H. Lochmüller

Graduate Research School

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58 Citations (Scopus)

Original language	English
Pages (from-to)	152
Journal	Journal of Neurology
Volume	261
DOIs	https://doi.org/10.1007/s00415-013-7154-1
Publication status	Published - 2014

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Bladen, C. L., Thompson, R., Jackson, J. M., Garland, C., Wegel, C., Ambrosini, A., Pisano, P., Walter, M. C., Schreiber, O., Lusakowska, A., Jedrzejowska, M., Kostera-Pruszczyk, A., Van Der Pol, L., Wadman, R. I., Gredal, O., Karaduman, A., Topaloglu, H., Yilmaz, O., Matyushenko, V., ... Lochmüller, H. (2014). Mapping the differences in care for 5,000 Spinal Muscular Atrophy patients, a survey of 24 national registries in North America, Australasia and Europe. Journal of Neurology, 261, 152. https://doi.org/10.1007/s00415-013-7154-1

Bladen, C.L. ; Thompson, R. ; Jackson, J.M. ; Garland, C. ; Wegel, C. ; Ambrosini, A. ; Pisano, P. ; Walter, M.C. ; Schreiber, O. ; Lusakowska, A. ; Jedrzejowska, M. ; Kostera-Pruszczyk, A. ; Van Der Pol, L. ; Wadman, R.I. ; Gredal, O. ; Karaduman, A. ; Topaloglu, H. ; Yilmaz, O. ; Matyushenko, V. ; Rasic, V.M. ; Kosac, A. ; Karcagi, V. ; Garami, M. ; Herczegfalvi, A. ; Monges, S. ; Moresco, A. ; Chertkoff, L. ; Chamova, T. ; Guergueltcheva, V. ; Butoianu, N. ; Craiu, D. ; Korngut, L. ; Campbell, C. ; Haberlova, J. ; Strenkova, J. ; Alejandro, M. ; Jimenez, A. ; Ortiz, G.G. ; Enriquez, G.V.G. ; Rodrigues, M. ; Roxburgh, R. ; Dawkins, H. ; Youngs, L. ; Lahdetie, J. ; Angelkova, N. ; Saugier-Veber, P. ; Cuisset, J.-M. ; Bloetzer, C. ; Jeannet, P.-Y. ; Klein, A. ; Nascimento, A. ; Tizzano, E. ; Salgado, D. ; Mercuri, E. ; Sejersen, T. ; Kirschner, J. ; Rafferty, K. ; Straub, V. ; Bushby, K. ; Verschuuren, J. ; Beroud, C. ; Lochmüller, H. / Mapping the differences in care for 5,000 Spinal Muscular Atrophy patients, a survey of 24 national registries in North America, Australasia and Europe. In: Journal of Neurology. 2014 ; Vol. 261. pp. 152.

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title = "Mapping the differences in care for 5,000 Spinal Muscular Atrophy patients, a survey of 24 national registries in North America, Australasia and Europe",

author = "C.L. Bladen and R. Thompson and J.M. Jackson and C. Garland and C. Wegel and A. Ambrosini and P. Pisano and M.C. Walter and O. Schreiber and A. Lusakowska and M. Jedrzejowska and A. Kostera-Pruszczyk and {Van Der Pol}, L. and R.I. Wadman and O. Gredal and A. Karaduman and H. Topaloglu and O. Yilmaz and V. Matyushenko and V.M. Rasic and A. Kosac and V. Karcagi and M. Garami and A. Herczegfalvi and S. Monges and A. Moresco and L. Chertkoff and T. Chamova and V. Guergueltcheva and N. Butoianu and D. Craiu and L. Korngut and C. Campbell and J. Haberlova and J. Strenkova and M. Alejandro and A. Jimenez and G.G. Ortiz and G.V.G. Enriquez and M. Rodrigues and R. Roxburgh and H. Dawkins and L. Youngs and J. Lahdetie and N. Angelkova and P. Saugier-Veber and J.-M. Cuisset and C. Bloetzer and P.-Y. Jeannet and A. Klein and A. Nascimento and E. Tizzano and D. Salgado and E. Mercuri and T. Sejersen and J. Kirschner and K. Rafferty and V. Straub and K. Bushby and J. Verschuuren and C. Beroud and H. Lochm{\"u}ller",

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Bladen, CL, Thompson, R, Jackson, JM, Garland, C, Wegel, C, Ambrosini, A, Pisano, P, Walter, MC, Schreiber, O, Lusakowska, A, Jedrzejowska, M, Kostera-Pruszczyk, A, Van Der Pol, L, Wadman, RI, Gredal, O, Karaduman, A, Topaloglu, H, Yilmaz, O, Matyushenko, V, Rasic, VM, Kosac, A, Karcagi, V, Garami, M, Herczegfalvi, A, Monges, S, Moresco, A, Chertkoff, L, Chamova, T, Guergueltcheva, V, Butoianu, N, Craiu, D, Korngut, L, Campbell, C, Haberlova, J, Strenkova, J, Alejandro, M, Jimenez, A, Ortiz, GG, Enriquez, GVG, Rodrigues, M, Roxburgh, R, Dawkins, H, Youngs, L, Lahdetie, J, Angelkova, N, Saugier-Veber, P, Cuisset, J-M, Bloetzer, C, Jeannet, P-Y, Klein, A, Nascimento, A, Tizzano, E, Salgado, D, Mercuri, E, Sejersen, T, Kirschner, J, Rafferty, K, Straub, V, Bushby, K, Verschuuren, J, Beroud, C & Lochmüller, H 2014, 'Mapping the differences in care for 5,000 Spinal Muscular Atrophy patients, a survey of 24 national registries in North America, Australasia and Europe', Journal of Neurology, vol. 261, pp. 152. https://doi.org/10.1007/s00415-013-7154-1

Mapping the differences in care for 5,000 Spinal Muscular Atrophy patients, a survey of 24 national registries in North America, Australasia and Europe. / Bladen, C.L.; Thompson, R.; Jackson, J.M.; Garland, C.; Wegel, C.; Ambrosini, A.; Pisano, P.; Walter, M.C.; Schreiber, O.; Lusakowska, A.; Jedrzejowska, M.; Kostera-Pruszczyk, A.; Van Der Pol, L.; Wadman, R.I.; Gredal, O.; Karaduman, A.; Topaloglu, H.; Yilmaz, O.; Matyushenko, V.; Rasic, V.M.; Kosac, A.; Karcagi, V.; Garami, M.; Herczegfalvi, A.; Monges, S.; Moresco, A.; Chertkoff, L.; Chamova, T.; Guergueltcheva, V.; Butoianu, N.; Craiu, D.; Korngut, L.; Campbell, C.; Haberlova, J.; Strenkova, J.; Alejandro, M.; Jimenez, A.; Ortiz, G.G.; Enriquez, G.V.G.; Rodrigues, M.; Roxburgh, R.; Dawkins, H.; Youngs, L.; Lahdetie, J.; Angelkova, N.; Saugier-Veber, P.; Cuisset, J.-M.; Bloetzer, C.; Jeannet, P.-Y.; Klein, A.; Nascimento, A.; Tizzano, E.; Salgado, D.; Mercuri, E.; Sejersen, T.; Kirschner, J.; Rafferty, K.; Straub, V.; Bushby, K.; Verschuuren, J.; Beroud, C.; Lochmüller, H.

In: Journal of Neurology, Vol. 261, 2014, p. 152.

Research output: Contribution to journal › Article › peer-review

TY - JOUR

T1 - Mapping the differences in care for 5,000 Spinal Muscular Atrophy patients, a survey of 24 national registries in North America, Australasia and Europe

AU - Bladen, C.L.

AU - Thompson, R.

AU - Jackson, J.M.

AU - Garland, C.

AU - Wegel, C.

AU - Ambrosini, A.

AU - Pisano, P.

AU - Walter, M.C.

AU - Schreiber, O.

AU - Lusakowska, A.

AU - Jedrzejowska, M.

AU - Kostera-Pruszczyk, A.

AU - Van Der Pol, L.

AU - Wadman, R.I.

AU - Gredal, O.

AU - Karaduman, A.

AU - Topaloglu, H.

AU - Yilmaz, O.

AU - Matyushenko, V.

AU - Rasic, V.M.

AU - Kosac, A.

AU - Karcagi, V.

AU - Garami, M.

AU - Herczegfalvi, A.

AU - Monges, S.

AU - Moresco, A.

AU - Chertkoff, L.

AU - Chamova, T.

AU - Guergueltcheva, V.

AU - Butoianu, N.

AU - Craiu, D.

AU - Korngut, L.

AU - Campbell, C.

AU - Haberlova, J.

AU - Strenkova, J.

AU - Alejandro, M.

AU - Jimenez, A.

AU - Ortiz, G.G.

AU - Enriquez, G.V.G.

AU - Rodrigues, M.

AU - Roxburgh, R.

AU - Dawkins, H.

AU - Youngs, L.

AU - Lahdetie, J.

AU - Angelkova, N.

AU - Saugier-Veber, P.

AU - Cuisset, J.-M.

AU - Bloetzer, C.

AU - Jeannet, P.-Y.

AU - Klein, A.

AU - Nascimento, A.

AU - Tizzano, E.

AU - Salgado, D.

AU - Mercuri, E.

AU - Sejersen, T.

AU - Kirschner, J.

AU - Rafferty, K.

AU - Straub, V.

AU - Bushby, K.

AU - Verschuuren, J.

AU - Beroud, C.

AU - Lochmüller, H.

PY - 2014

Y1 - 2014

U2 - 10.1007/s00415-013-7154-1

DO - 10.1007/s00415-013-7154-1

M3 - Article

C2 - 24162038

VL - 261

SP - 152

JO - Journal of Neurology

JF - Journal of Neurology

SN - 0340-5354

ER -