254th ENMC international workshop. Formation of a European network to initiate a European data collection, along with development and sharing of treatment guidelines for adult SMA patients. Virtual meeting 28 – 30 January 2022

Maggie C. Walter; Pascal Laforêt; W. Ludo van der Pol; Elena Pegoraro; Shahram Attarian; Bart Bartels; Ksenija Gorni; Nathalie Goemans; Nicole Gusset; Victoria Hodgkinson; Tim Hagenacker; Janbernd Kirschner; Andrea Klein; Anna Kostera-Pruszczyk; Hanns Lochmüller; Chiara Marini-Bettolo; Eugenio Mercuri; Robert Muni-Lofra; Laetitia Ouillade; Rosaline Quinlivan; Constantinos Papadopoulos; Hélène Prigent; Emmanuelle Salort-Campana; Valeria A. Sansone; Rivka Smit; Piera Smeriglio; Simone Thiele; Ben Tichler; Peter Van den Bergh; Juan F. Vazquez-Costa; John Vissing

doi:10.1016/j.nmd.2023.03.011

254th ENMC international workshop. Formation of a European network to initiate a European data collection, along with development and sharing of treatment guidelines for adult SMA patients. Virtual meeting 28 – 30 January 2022

Maggie C. Walter^*
, Pascal Laforêt
, W. Ludo van der Pol
, Elena Pegoraro
, Shahram Attarian
, Bart Bartels
, Ksenija Gorni
, Nathalie Goemans
, Nicole Gusset
, Victoria Hodgkinson
, Tim Hagenacker
, Janbernd Kirschner
, Andrea Klein
, Anna Kostera-Pruszczyk
, Hanns Lochmüller
, Chiara Marini-Bettolo
, Eugenio Mercuri
, Robert Muni-Lofra
, Laetitia Ouillade
, Rosaline Quinlivan

Constantinos Papadopoulos, Hélène Prigent, Emmanuelle Salort-Campana, Valeria A. Sansone, Rivka Smit, Piera Smeriglio, Simone Thiele, Ben Tichler, Peter Van den Bergh, Juan F. Vazquez-Costa, John Vissing,

^*Corresponding author for this work

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

Original language	English
Pages (from-to)	511-522
Number of pages	12
Journal	Neuromuscular Disorders
Volume	33
Issue number	6
DOIs	https://doi.org/10.1016/j.nmd.2023.03.011
Publication status	Published - Jun 2023

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10.1016/j.nmd.2023.03.011

1-s2.0-S0960896623000950-mainFinal published version, 628 KBLicence: Taverne

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Walter, M. C., Laforêt, P., van der Pol, W. L., Pegoraro, E., Attarian, S., Bartels, B., Gorni, K., Goemans, N., Gusset, N., Hodgkinson, V., Hagenacker, T., Kirschner, J., Klein, A., Kostera-Pruszczyk, A., Lochmüller, H., Marini-Bettolo, C., Mercuri, E., Muni-Lofra, R., Ouillade, L. (2023). 254th ENMC international workshop. Formation of a European network to initiate a European data collection, along with development and sharing of treatment guidelines for adult SMA patients. Virtual meeting 28 – 30 January 2022. Neuromuscular Disorders, 33(6), 511-522. https://doi.org/10.1016/j.nmd.2023.03.011

@article{57e9c323b5c54f359ad2631e094cbc1a,

title = "254th ENMC international workshop. Formation of a European network to initiate a European data collection, along with development and sharing of treatment guidelines for adult SMA patients. Virtual meeting 28 – 30 January 2022",

author = "Walter, \{Maggie C.\} and Pascal Lafor{\^e}t and \{van der Pol\}, \{W. Ludo\} and Elena Pegoraro and Shahram Attarian and Bart Bartels and Ksenija Gorni and Nathalie Goemans and Nicole Gusset and Victoria Hodgkinson and Tim Hagenacker and Janbernd Kirschner and Andrea Klein and Anna Kostera-Pruszczyk and Hanns Lochm{\"u}ller and Chiara Marini-Bettolo and Eugenio Mercuri and Robert Muni-Lofra and Laetitia Ouillade and Rosaline Quinlivan and Constantinos Papadopoulos and H{\'e}l{\`e}ne Prigent and Emmanuelle Salort-Campana and Sansone, \{Valeria A.\} and Rivka Smit and Piera Smeriglio and Simone Thiele and Ben Tichler and \{Van den Bergh\}, Peter and Vazquez-Costa, \{Juan F.\} and John Vissing",

note = "Funding Information: 29 clinical researchers from 12 different countries (Belgium, Canada, Denmark, France, Germany, Greece, Italy, Netherlands, Poland, Spain, Switzerland, UK), 2 SMA patients, one representative of a patient advocacy group and 2 industry representatives from Biogen and Roche met for a virtual workshop in the weekend of 28–30 January 2022. The Workshop aimed at the formation of a European network to initiate a European data collection, along with development and sharing of treatment guidelines for adult SMA patients. This workshop was supported by the 10 ENMC partner organisations. ",

year = "2023",

month = jun,

doi = "10.1016/j.nmd.2023.03.011",

language = "English",

volume = "33",

pages = "511--522",

journal = "Neuromuscular Disorders",

issn = "0960-8966",

publisher = "Elsevier Limited",

number = "6",

}

Walter, MC, Laforêt, P, van der Pol, WL, Pegoraro, E, Attarian, S, Bartels, B, Gorni, K, Goemans, N, Gusset, N, Hodgkinson, V, Hagenacker, T, Kirschner, J, Klein, A, Kostera-Pruszczyk, A, Lochmüller, H, Marini-Bettolo, C, Mercuri, E, Muni-Lofra, R, Ouillade, L, Quinlivan, R, Papadopoulos, C, Prigent, H, Salort-Campana, E, Sansone, VA, Smit, R, Smeriglio, P, Thiele, S, Tichler, B, Van den Bergh, P, Vazquez-Costa, JF, Vissing, J 2023, '254th ENMC international workshop. Formation of a European network to initiate a European data collection, along with development and sharing of treatment guidelines for adult SMA patients. Virtual meeting 28 – 30 January 2022', Neuromuscular Disorders, vol. 33, no. 6, pp. 511-522. https://doi.org/10.1016/j.nmd.2023.03.011

254th ENMC international workshop. Formation of a European network to initiate a European data collection, along with development and sharing of treatment guidelines for adult SMA patients. Virtual meeting 28 – 30 January 2022. / Walter, Maggie C.; Laforêt, Pascal; van der Pol, W. Ludo et al.
In: Neuromuscular Disorders, Vol. 33, No. 6, 06.2023, p. 511-522.

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

TY - JOUR

T1 - 254th ENMC international workshop. Formation of a European network to initiate a European data collection, along with development and sharing of treatment guidelines for adult SMA patients. Virtual meeting 28 – 30 January 2022

AU - Walter, Maggie C.

AU - Laforêt, Pascal

AU - van der Pol, W. Ludo

AU - Pegoraro, Elena

AU - Attarian, Shahram

AU - Bartels, Bart

AU - Gorni, Ksenija

AU - Goemans, Nathalie

AU - Gusset, Nicole

AU - Hodgkinson, Victoria

AU - Hagenacker, Tim

AU - Kirschner, Janbernd

AU - Klein, Andrea

AU - Kostera-Pruszczyk, Anna

AU - Lochmüller, Hanns

AU - Marini-Bettolo, Chiara

AU - Mercuri, Eugenio

AU - Muni-Lofra, Robert

AU - Ouillade, Laetitia

AU - Quinlivan, Rosaline

AU - Papadopoulos, Constantinos

AU - Prigent, Hélène

AU - Salort-Campana, Emmanuelle

AU - Sansone, Valeria A.

AU - Smit, Rivka

AU - Smeriglio, Piera

AU - Thiele, Simone

AU - Tichler, Ben

AU - Van den Bergh, Peter

AU - Vazquez-Costa, Juan F.

AU - Vissing, John

N1 - Funding Information: 29 clinical researchers from 12 different countries (Belgium, Canada, Denmark, France, Germany, Greece, Italy, Netherlands, Poland, Spain, Switzerland, UK), 2 SMA patients, one representative of a patient advocacy group and 2 industry representatives from Biogen and Roche met for a virtual workshop in the weekend of 28–30 January 2022. The Workshop aimed at the formation of a European network to initiate a European data collection, along with development and sharing of treatment guidelines for adult SMA patients. This workshop was supported by the 10 ENMC partner organisations.

PY - 2023/6

Y1 - 2023/6

UR - https://www.scopus.com/pages/publications/85160562750

U2 - 10.1016/j.nmd.2023.03.011

DO - 10.1016/j.nmd.2023.03.011

M3 - Article

C2 - 37245491

AN - SCOPUS:85160562750

SN - 0960-8966

VL - 33

SP - 511

EP - 522

JO - Neuromuscular Disorders

JF - Neuromuscular Disorders

IS - 6

ER -

Walter MC, Laforêt P, van der Pol WL, Pegoraro E, Attarian S, Bartels B et al. 254th ENMC international workshop. Formation of a European network to initiate a European data collection, along with development and sharing of treatment guidelines for adult SMA patients. Virtual meeting 28 – 30 January 2022. Neuromuscular Disorders. 2023 Jun;33(6):511-522. doi: 10.1016/j.nmd.2023.03.011

254th ENMC international workshop. Formation of a European network to initiate a European data collection, along with development and sharing of treatment guidelines for adult SMA patients. Virtual meeting 28 – 30 January 2022

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