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8 results on '"van der Beek, Nadine Anna Maria Elisabeth"'

1. Telemedicine in Neuromuscular Diseases During Covid-19 Pandemic: ERN-NMD European Survey

Author

El-Hassar, Lynda, primary, Amara, Ahmed, additional, Sanson, Benoit, additional, Lacatus, Oana, additional, Amir Belhouchet, Ahmed, additional, Kroneman, Madelon, additional, Claeys, Kristl, additional, Plançon, Jean Philippe, additional, Rodolico, Carmelo, additional, Primiano, Guido, additional, Trojsi, Francesca, additional, Filosto, Massimiliano, additional, Mongini, Tiziana Enrica, additional, Bortolani, Sara, additional, Monforte, Mauro, additional, Carraro, Elena, additional, Maggi, Lorenzo, additional, Ricci, Federica, additional, Silani, Vincenzo, additional, Orsucci, Daniele, additional, Créange, Alain, additional, Péréon, Yann, additional, Stojkovic, Tanya, additional, van der Beek, Nadine Anna Maria Elisabeth, additional, Toscano, Antonio, additional, Pareyson, Davide, additional, Attarian, Shahram, additional, Van den Bergh, Peter Y.K., additional, Remiche, Gauthier, additional, Hoeijmakers, Janneke G.J., additional, Badrising, Umesh, additional, Voermans, Nicol C., additional, Kaindl, Angela M., additional, Schara-Schmidt, Ulrike, additional, Schoser, Benedikt, additional, Gazzerro, Elisabetta, additional, Haberlová, Jana, additional, Voháňka, Stanislav, additional, Pál, Endre, additional, Molnar, Maria Judit, additional, Leonardis, Lea, additional, Tournev, Ivailo L, additional, Osorio, Andrés Nascimento, additional, Olivé, Montse, additional, Muelas, Nuria, additional, Alonso-Perez, Jorge, additional, de Visser, Marianne, additional, Siciliano, Gabriele, additional, and Sacconi, Sabrina, additional

Published
2022
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2. Effect of alglucosidase alfa dosage on survival and walking ability in patients with classic infantile Pompe disease:a multicentre observational cohort study from the European Pompe Consortium

Author

Ditters, Imke Anne Maartje, Huidekoper, Hidde Harmen, Kruijshaar, Michelle Elisabeth, Rizopoulos, Dimitris, Hahn, Andreas, Mongini, Tiziana Enrica, Labarthe, François, Tardieu, Marine, Chabrol, Brigitte, Brassier, Anais, Parini, Rossella, Parenti, Giancarlo, van der Beek, Nadine Anna Maria Elisabeth, van der Ploeg, Ans Tjitske, van den Hout, Johanna Maria Pieternel, Mengel, Eugen, Hennermann, Julia, Smitka, Martin, Muschol, Nicole, Marquardt, Thorsten, Marquardt, Martina, Thiels, Charlotte, Spada, Marco, Pagliardini, Veronica, Menni, Francesca, della Casa, Roberto, Deodato, Federica, Gasperini, Serena, Burlina, Alberto, Donati, Alice, Pichard, Samia, Feillet, François, Huet, Fréderic, Mention, Karine, Eyer, Didier, Kuster, Alice, Espil Taris, Caroline, Lefranc, Jérémie, Barth, Magalie, Bruel, Henri, Chevret, Laurent, Pitelet, Gaele, Pitelet, Catherine, Rivier, François, Dobbelaere, Dries, Ditters, Imke Anne Maartje, Huidekoper, Hidde Harmen, Kruijshaar, Michelle Elisabeth, Rizopoulos, Dimitris, Hahn, Andreas, Mongini, Tiziana Enrica, Labarthe, François, Tardieu, Marine, Chabrol, Brigitte, Brassier, Anais, Parini, Rossella, Parenti, Giancarlo, van der Beek, Nadine Anna Maria Elisabeth, van der Ploeg, Ans Tjitske, van den Hout, Johanna Maria Pieternel, Mengel, Eugen, Hennermann, Julia, Smitka, Martin, Muschol, Nicole, Marquardt, Thorsten, Marquardt, Martina, Thiels, Charlotte, Spada, Marco, Pagliardini, Veronica, Menni, Francesca, della Casa, Roberto, Deodato, Federica, Gasperini, Serena, Burlina, Alberto, Donati, Alice, Pichard, Samia, Feillet, François, Huet, Fréderic, Mention, Karine, Eyer, Didier, Kuster, Alice, Espil Taris, Caroline, Lefranc, Jérémie, Barth, Magalie, Bruel, Henri, Chevret, Laurent, Pitelet, Gaele, Pitelet, Catherine, Rivier, François, and Dobbelaere, Dries

Published
2022

3. Effect of alglucosidase alfa dosage on survival and walking ability in patients with classic infantile Pompe disease: a multicentre observational cohort study from the European Pompe Consortium

Author

Ditters, Imke Anne Maartje, primary, Huidekoper, Hidde Harmen, additional, Kruijshaar, Michelle Elisabeth, additional, Rizopoulos, Dimitris, additional, Hahn, Andreas, additional, Mongini, Tiziana Enrica, additional, Labarthe, François, additional, Tardieu, Marine, additional, Chabrol, Brigitte, additional, Brassier, Anais, additional, Parini, Rossella, additional, Parenti, Giancarlo, additional, van der Beek, Nadine Anna Maria Elisabeth, additional, van der Ploeg, Ans Tjitske, additional, van den Hout, Johanna Maria Pieternel, additional, Mengel, Eugen, additional, Hennermann, Julia, additional, Smitka, Martin, additional, Muschol, Nicole, additional, Marquardt, Thorsten, additional, Marquardt, Martina, additional, Thiels, Charlotte, additional, Spada, Marco, additional, Pagliardini, Veronica, additional, Menni, Francesca, additional, della Casa, Roberto, additional, Deodato, Federica, additional, Gasperini, Serena, additional, Burlina, Alberto, additional, Donati, Alice, additional, Pichard, Samia, additional, Feillet, François, additional, Huet, Fréderic, additional, Mention, Karine, additional, Eyer, Didier, additional, Kuster, Alice, additional, Espil Taris, Caroline, additional, Lefranc, Jérémie, additional, Barth, Magalie, additional, Bruel, Henri, additional, Chevret, Laurent, additional, Pitelet, Gaele, additional, Pitelet, Catherine, additional, Rivier, François, additional, and Dobbelaere, Dries, additional

Published
2022
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4. Telemedicine in Neuromuscular Diseases During Covid-19 Pandemic: ERN-NMD European Survey

Author

El-Hassar, Lynda, Amara, Ahmed, Sanson, Benoit, Lacatus, Oana, Amir Belhouchet, Ahmed, Kroneman, Madelon, Claeys, Kristl, Plançon, Jean Philippe, Rodolico, Carmelo, Primiano, Guido, Trojsi, Francesca, Filosto, Massimiliano, Mongini, Tiziana Enrica, Bortolani, Sara, Monforte, Mauro, Carraro, Elena, Maggi, Lorenzo, Ricci, Federica, Silani, Vincenzo, Orsucci, Daniele, Créange, Alain, Péréon, Yann, Stojkovic, Tanya, van der Beek, Nadine Anna Maria Elisabeth, Toscano, Antonio, Pareyson, Davide, Attarian, Shahram, Van den Bergh, Peter Y.K., Remiche, Gauthier, Hoeijmakers, Janneke G.J., Badrising, Umesh, Voermans, Nicol C., Kaindl, Angela M., Schara-Schmidt, Ulrike, Schoser, Benedikt, Gazzerro, Elisabetta, Haberlová, Jana, Voháňka, Stanislav, Pál, Endre, Molnar, Maria Judit, Leonardis, Lea, Tournev, Ivailo L, Osorio, Andrés Nascimento, Olivé, Montse, Muelas, Nuria, Alonso-Perez, Jorge, Plá, Francesc, de Visser, Marianne, Siciliano, Gabriele, and Sacconi, Sabrina

Abstract

Telemedicine (TM) contributes to bridge the gap between healthcare facilities and patients’ homes with neuromuscular disease (NMD) because of mobility issues. However, its deployment is limited due to difficulties evaluating subtle neurological signs such as mild weakness or sensory deficits. The COVID-19 pandemic has disrupted healthcare delivery worldwide, necessitating rapid measures implementation by health care providers (HCPs) to protect patients from acquiring SARS-CoV-2 while maintaining the best care and treatment. Given the challenges faced by remote healthcare assistance of NMD patients, we aim to evaluate the use of TM in NMD during the COVID-19 pandemic. Based on the Model for Assessment-of-Telemedicine-Applications (MAST), we conducted a survey amongst clinicians of the ERN EURO NMD (European-Reference-Network-for-Rare-Neuromuscular-Diseases). Based on 42 responses over 76 expected ones, our results show that the COVID-19 pandemic significantly increased the number of HCPs using TM (from 60% to 100%). The TM types most used during the COVID-19 period are teleconsultation and consultation by phone, particularly in the context of symptoms worsening in NMD patients with COVID-19 infection. Most European HCPs were satisfied when using TM but as a complementary option to physical consultations. Many responses addressed the issue of technical aspects needing improvement, particularly for elderly patients who need caregivers’ assistance for accessing the TM platform. TM has been essential during COVID-19, but its use still presents some limitations for NMD patients with cognitive deficits or for first-time diagnosis. Thus, TM should be used as complement to, rather than substitute, for face-to-face consultations.

Published
2023
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5. Modifying the Medical Research Council grading system through Rasch analyses

Author

Vanhoutte, Els Karla, Faber, Catharina Gerritdina, van Nes, Sonja Ingrid, Jacobs, Bart Casper, van Doorn, Pieter Antoon, van Koningsveld, Rinske, Cornblath, David Reid, van der Kooi, Anneke Jelly, Cats, Elisabeth Aviva, van den Berg, Leonard Hendrik, Notermans, Nicolette Claudia, van der Pol, Willem Lodewijk, Hermans, Mieke Catharina Elisabeth, van der Beek, Nadine Anna Maria Elisabeth, Gorson, Kenneth Craig, Eurelings, Marijke, Engelsman, Jeroen, Boot, Hendrik, Meijer, Ronaldus Jacobus, Lauria, Giuseppe, Tennant, Alan, and Merkies, Ingemar Sergio José

Published
2012
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6. Modifying the Medical Research Council grading system through Rasch analyses

Author

Vanhoutte, Els Karla, primary, Faber, Catharina Gerritdina, additional, van Nes, Sonja Ingrid, additional, Jacobs, Bart Casper, additional, van Doorn, Pieter Antoon, additional, van Koningsveld, Rinske, additional, Cornblath, David Reid, additional, van der Kooi, Anneke Jelly, additional, Cats, Elisabeth Aviva, additional, van den Berg, Leonard Hendrik, additional, Notermans, Nicolette Claudia, additional, van der Pol, Willem Lodewijk, additional, Hermans, Mieke Catharina Elisabeth, additional, van der Beek, Nadine Anna Maria Elisabeth, additional, Gorson, Kenneth Craig, additional, Eurelings, Marijke, additional, Engelsman, Jeroen, additional, Boot, Hendrik, additional, Meijer, Ronaldus Jacobus, additional, Lauria, Giuseppe, additional, Tennant, Alan, additional, and Merkies, Ingemar Sergio José, additional

Published
2011
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7. Effect of alglucosidase alfa dosage on survival and walking ability in patients with classic infantile Pompe disease: a multicentre observational cohort study from the European Pompe Consortium

Author

Ditters, Imke Anne Maartje, Huidekoper, Hidde Harmen, Kruijshaar, Michelle Elisabeth, Rizopoulos, Dimitris, Hahn, Andreas, Mongini, Tiziana Enrica, Labarthe, François, Tardieu, Marine, Chabrol, Brigitte, Brassier, Anais, Parini, Rossella, Parenti, Giancarlo, van der Beek, Nadine Anna Maria Elisabeth, van der Ploeg, Ans Tjitske, van den Hout, Johanna Maria Pieternel, Mengel, Eugen, Hennermann, Julia, Smitka, Martin, Muschol, Nicole, Marquardt, Thorsten, Marquardt, Martina, Thiels, Charlotte, Spada, Marco, Pagliardini, Veronica, Menni, Francesca, della Casa, Roberto, Deodato, Federica, Gasperini, Serena, Burlina, Alberto, Donati, Alice, Pichard, Samia, Feillet, François, Huet, Fréderic, Mention, Karine, Eyer, Didier, Kuster, Alice, Espil Taris, Caroline, Lefranc, Jérémie, Barth, Magalie, Bruel, Henri, Chevret, Laurent, Pitelet, Gaele, Pitelet, Catherine, Rivier, François, and Dobbelaere, Dries

Abstract

Enzyme replacement therapy (ERT) with alglucosidase alfa has been found to improve outcomes in patients with classic infantile Pompe disease, who without treatment typically die before the age of 1 year. Variable responses to the standard recommended dosage have led to alternative dosing strategies. We aimed to assess the effect of real-world ERT regimens on survival and walking ability in these patients.

Published
2021
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8. Telemedicine in Neuromuscular Diseases During Covid-19 Pandemic: ERN-NMD European Survey

Author

Lynda El-Hassar, Ahmed Amara, Benoit Sanson, Oana Lacatus, Ahmed Amir Belhouchet, Madelon Kroneman, Kristl Claeys, Jean Philippe Plançon, Carmelo Rodolico, Guido Primiano, Francesca Trojsi, Massimiliano Filosto, Tiziana Enrica Mongini, Sara Bortolani, Mauro Monforte, Elena Carraro, Lorenzo Maggi, Federica Ricci, Vincenzo Silani, Daniele Orsucci, Alain Créange, Yann Péréon, Tanya Stojkovic, Nadine Anna Maria Elisabeth van der Beek, Antonio Toscano, Davide Pareyson, Shahram Attarian, Peter Y.K. Van den Bergh, Gauthier Remiche, Janneke G.J. Hoeijmakers, Umesh Badrising, Nicol C. Voermans, Angela M. Kaindl, Ulrike Schara-Schmidt, Benedikt Schoser, Elisabetta Gazzerro, Jana Haberlová, Stanislav Voháňka, Endre Pál, Maria Judit Molnar, Lea Leonardis, Ivailo L Tournev, Andrés Nascimento Osorio, Montse Olivé, Nuria Muelas, Jorge Alonso-Perez, Francesc Plá, Marianne de Visser, Gabriele Siciliano, Sabrina Sacconi, El-Hassar, Lynda, Amara, Ahmed, Sanson, Benoit, Lacatus, Oana, Amir Belhouchet, Ahmed, Kroneman, Madelon, Claeys, Kristl, Plançon, Jean Philippe, Rodolico, Carmelo, Primiano, Guido, Trojsi, Francesca, Filosto, Massimiliano, Mongini, Tiziana Enrica, Bortolani, Sara, Monforte, Mauro, Carraro, Elena, Maggi, Lorenzo, Ricci, Federica, Silani, Vincenzo, Orsucci, Daniele, Créange, Alain, Péréon, Yann, Stojkovic, Tanya, van der Beek, Nadine Anna Maria Elisabeth, Toscano, Antonio, Pareyson, Davide, Attarian, Shahram, Van den Bergh, Peter Y K, Remiche, Gauthier, Hoeijmakers, Janneke G J, Badrising, Umesh, Voermans, Nicol C, Kaindl, Angela M, Schara-Schmidt, Ulrike, Schoser, Benedikt, Gazzerro, Elisabetta, Haberlová, Jana, Voháňka, Stanislav, Pál, Endre, Molnar, Maria Judit, Leonardis, Lea, Tournev, Ivailo L, Osorio, Andrés Nascimento, Olivé, Montse, Muelas, Nuria, Alonso-Perez, Jorge, Plá, Francesc, de Visser, Marianne, Siciliano, Gabriele, Sacconi, Sabrina, Neurology, AII - Infectious diseases, ANS - Neuroinfection & -inflammation, Klinische Neurowetenschappen, MUMC+: MA Med Staf Spec Neurologie (9), and RS: MHeNs - R1 - Cognitive Neuropsychiatry and Clinical Neuroscience

Subjects
Europe, All institutes and research themes of the Radboud University Medical Center, Neurology, Covid-19, Telemedicine, neuromuscular diseases, Medizin, Settore MED/26 - Neurologia, Neurology (clinical), Disorders of movement Donders Center for Medical Neuroscience [Radboudumc 3]
Abstract

BACKGROUND: Telemedicine (TM) contributes to bridge the gap between healthcare facilities and patients' homes with neuromuscular disease (NMD) because of mobility issues. However, its deployment is limited due to difficulties evaluating subtle neurological signs such as mild weakness or sensory deficits. The COVID-19 pandemic has disrupted healthcare delivery worldwide, necessitating rapid measures implementation by health care providers (HCPs) to protect patients from acquiring SARS-CoV-2 while maintaining the best care and treatment.OBJECTIVES: Given the challenges faced by remote healthcare assistance of NMD patients, we aim to evaluate the use of TM in NMD during the COVID-19 pandemic.METHODS: Based on the Model for Assessment-of-Telemedicine-Applications (MAST), we conducted a survey amongst clinicians of the ERN EURO NMD (European-Reference-Network-for-Rare-Neuromuscular-Diseases).RESULTS: Based on 42 responses over 76 expected ones, our results show that the COVID-19 pandemic significantly increased the number of HCPs using TM (from 60% to 100%). The TM types most used during the COVID-19 period are teleconsultation and consultation by phone, particularly in the context of symptoms worsening in NMD patients with COVID-19 infection. Most European HCPs were satisfied when using TM but as a complementary option to physical consultations. Many responses addressed the issue of technical aspects needing improvement, particularly for elderly patients who need caregivers' assistance for accessing the TM platform.CONCLUSIONS: TM has been essential during COVID-19, but its use still presents some limitations for NMD patients with cognitive deficits or for first-time diagnosis. Thus, TM should be used as complement to, rather than substitute, for face-to-face consultations.

Published
2022

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