Patients’ and caregivers’ perception of multidimensional and palliative care in amyotrophic lateral sclerosis – protocol of a German multicentre study

Autor: Katharina Linse, Constanze Weber, Peter Reilich, Florian Schöberl, Matthias Boentert, Susanne Petri, Annekathrin Rödiger, Andreas Posa, Markus Otto, Joachim Wolf, Daniel Zeller, Robert Brunkhorst, Jan Koch, Andreas Hermann, Julian Großkreutz, Carsten Schröter, Martin Groß, Paul Lingor, Gerrit Machetanz, Luisa Semmler, Johannes Dorst, Dorothée Lulé, Albert Ludolph, Thomas Meyer, André Maier, Moritz Metelmann, Martin Regensburger, Jürgen Winkler, Berthold Schrank, Zacharias Kohl, Tim Hagenacker, Svenja Brakemeier, Ute Weyen, Markus Weiler, Stefan Lorenzl, Sarah Bublitz, Patrick Weydt, Torsten Grehl, Sylvia Kotterba, Hanna-Sophie Lapp, Maren Freigang, Maximilian Vidovic, Elisa Aust, René Günther

Publikováno v: Neurological Research and Practice, Vol 6, Iss 1, Pp 1-8 (2024)

Abstract Introduction Amyotrophic lateral sclerosis (ALS) is an inevitably fatal condition that leads to a progressive loss of physical functioning, which results in a high psychosocial burden and organizational challenges related to medical care. Mu

Externí odkaz: https://doaj.org/article/c0f478ca254b44ff867cfc78aad679ea

Safety and efficacy of oral levosimendan in people with amyotrophic lateral sclerosis (the REFALS study): a randomised, double-blind, placebo-controlled phase 3 trial

Autor: Michael Pulley, Mikko Kuoppamäki, Carolyn A Young, Jesus S. Mora Pardina, Kumaraswamy Sivakumar, Toni Sarapohja, Michael A. Elliott, Chafic Karam, Sandeep Rana, Orla Hardiman, Nathan P. Staff, Letizia Mazzini, Gabriele Mora, Thomas F. Meyer, Colleen O'Connell, Stéphanie Delstanche, Elham Bayat, Michael D. Weiss, Waqar Waheed, Nenad Mitrovic, Philippe Corcia, Marie-Hélène Soriani, Edward J. Kasarskis, Claudia Caponnetto, Dale J. Lange, Tuan Vu, Leo McCluskey, Berthold Schrank, Angela Genge, Matthew C. Kiernan, Valtteri V Aho, Manu Jokela, Philip Van Damme, Juan F. Vázquez Costa, Maurizio Inghilleri, Wolfgang Löscher, David Schultz, Tero Tapiola, Susanne Petri, Adriano Chiò, Gary L. Pattee, Julian Großkreutz, Ammar Al-Chalabi, Aziz Shaibani, Susan Mathers, Kevin J. Felice, Kimberly Goslin, James Caress, Matthias Boentert, Albert C. Ludolph, Aleksandar Radunovic, Robert D. Henderson, James Wymer, Todd Levine, Jakob Rath, Merrilee Needham, William Camu, Gaurav Guliani, Rune Johansson, Leonard H. van den Berg, Namita Goyal, Mark B. Bromberg, Bjorn Oskarsson, Annie Dionne, Eduardo Locatelli, Brent T. Harris, Suma Babu, Richard Bedlack, John Ravits, Jinsy A. Andrews, Philippe Couratier, Gabriele Siciliano, Hannu Laaksovirta, Kourosh Rezania, Lawrence Korngut, Eduardo Aguera Morales, Peter M Andersen, Eva Farrero Munoz, David Lacomis, Stephen N. Scelsa, Chris Garratt, Matthew Burford, Merit Cudkowicz, Nicholas J. Maragakis, Wendy Johnston, Martin M. Brown, Johannes Prudlo, Justin Y. Kwan, Dominic B. Fee, Senda Ajroud-Driss, Stephen A. Goutman, John Turnbull, Michael H. Rivner, Timothy M. Miller, Jan De Bleecker, Caroline Ingre, Luis Varona, Genevieve Matte, Daragh Heitzman, Robert Untucht, Lorne Zinman, Adam Quick, Jonathan S. Katz

Publikováno v: The Lancet Neurology. 20:821-831

Summary Background There is an urgent unmet need for new therapies in amyotrophic lateral sclerosis. In a clinical study with healthy volunteers, levosimendan, a calcium sensitiser, was shown to improve neuromechanical efficiency and contractile func

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::47e159b8bed1a737713c1c2f5bf0a571
https://doi.org/10.1016/s1474-4422(21)00242-8

Safety and efficacy of rasagiline as an add-on therapy to riluzole in patients with amyotrophic lateral sclerosis: a randomised, double-blind, parallel-group, placebo-controlled, phase 2 trial

Autor: Albert C Ludolph, Joachim Schuster, Johannes Dorst, Luc Dupuis, Jens Dreyhaupt, Jochen H Weishaupt, Jan Kassubek, Ulrike Weiland, Susanne Petri, Thomas Meyer, Julian Grosskreutz, Berthold Schrank, Matthias Boentert, Alexander Emmer, Andreas Hermann, Daniel Zeller, Johannes Prudlo, Andrea S Winkler, Torsten Grehl, Michael T Heneka, Siw Wollebæk Johannesen, Bettina Göricke, Andreas Funke, Dagmar Kettemann, Robert Meyer, Kai Gruhn, Peter Schwenkreis, Philipp Stude, Delia Kurzwelly, Alexander Storch, Nicole Richter, Tobias Frank, Katharina Hein, Frank Hanisch, Dagmar Hanke, Torsten Kraya, Andreas Posa, Martina Romanakova, Susanne Schilling, Susanne Abdulla, Sebastian Böselt, Claas Janssen, Imken Lange, Xenia Kobeleva, Sonja Körner, Katja Kollewe, Alma Osmanovic, Nicole Scharn, Klaus J Rath, Christiane Dahms, Anne Gunkel, Bianka Heiling, Thomas Ringer, Uta Smesny, Sarah Baumeister, Achim Berthele, Sarah Bublitz, Esra Akova-Öztürk, Bianca Stubbe-Dräger, Alexandra Rahmann, Charlotte Young, Peter Young, Dobri Baldaranov, Ulrich Bogdahn, Andrei Khomenko, Wilhelm Schulte-Mattler, Christina Stadler, Susanne Husung, Simone Tesar, Nigar Dargah-Zaden, Christina Last, Eva Langer, Ann-Sophie Lauenstein, Eckard Lensch, Carolyn Mc Farlane, Heike Fischer-Brasse, Klara Orbán, Bertold Schrank, Sonja Schürger, Stephan Klebe, Peter Kraft, Thomas Musacchio, Carola Seiler

Publikováno v: The Lancet Neurology
The Lancet Neurology, Elsevier, 2018, 17 (8), pp.681-688. ⟨10.1016/S1474-4422(18)30176-5⟩
The Lancet Neurology, 2018, 17 (8), pp.681-688. ⟨10.1016/S1474-4422(18)30176-5⟩

International audience; Background: Rasagiline, a monoamine oxidase B inhibitor with neuroprotective potential in Parkinson's disease, has shown a disease-modifying effect in the SOD1-Gly93Ala low-expressing mouse model of amyotrophic lateral scleros

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::b70e9f6bbf70e7d2a063a95b23e7ffaa
https://doi.org/10.1016/s1474-4422(18)30176-5

[Treatment evaluation in patients with 5q-associated spinal muscular atrophy : Real-world experience]

Autor: Maggie C, Walter, Bianca, Dräger, Rene, Günther, Andreas, Hermann, Tim, Hagenacker, Christoph, Kleinschnitz, Wolfgang, Löscher, Thomas, Meyer, Berthold, Schrank, Inge, Schwersenz, Claudia D, Wurster, Albert C, Ludolph, Janbernd, Kirschner

Publikováno v: Der Nervenarzt. 90(4)

Spinal muscular atrophy (SMA) is a progressive autosomal recessive neurodegenerative disease with an incidence of 1:10,000 live births. With a deeper understanding of the molecular basis of SMA in the past two decades, a major focus of therapeutic de

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=pmid________::8f376f105b72e68c4d3b66bc816fed98
https://pubmed.ncbi.nlm.nih.gov/30617569

Alterations in the hypothalamic melanocortin pathway in amyotrophic lateral sclerosis

Autor: Vercruysse, Pauline, Sinniger, Jérôme, Dreyhaupt, Jens, Grehl, Torsten, Hermann, Andreas, Grosskreutz, Julian, Witting, Anke, Van Den Bosch, Ludo, Spreux-Varoquaux, Odile, Group, GERP ALS Study, Ludolph, Albert C, Dupuis, Luc, El Oussini, Hajer, Borisow, Nadja, Holm, Theresa, Maier, Andre, Meyer, Thomas, Budde, Paula, Gruhn, Kai, Bewersdorff, Malte, Heneka, Michael, Storch, Alexander, Scekic-Zahirovic, Jelena, Frank, Tobias, Göricke, Bettina, Weishaupt, Jochen, Eger, Katharina, Hanisch, Frank, Zierz, Stephan, Boeck, Anna-Lena, Dengler, Reinhard, Koerner, Sonja, Kollewe, Katja, Dieterlé, Stéphane, Petri, Susanne, Prell, Tino, Ringer, Thomas, Zinke, Jan, Anneser, Johanna, Borasio, Gian Domenico, Chahli, Christine, Winkler, Andrea S, Boentert, Matthias, Stubbe-Draeger, Bianca, Young, Peter, Bogdahn, Ulrich, Franz, Steffen, Haringer, Verena, Weidner, Norbert, Benecke, Reiner, Meister, Stefanie, Prudlo, Johannes, Wittstock, Matthias, Dorst, Johannes, Hendrich, Corinna, Sperfeld, Anne-Dorte, Weiland, Ulrike, Neidhardt, Sabine, Schrank, Berthold, Beck, Marcus, Kraft, Peter, Toyka, Klaus, Ulzheimer, Jochen, Wessig, Carsten, Kassubek, Jan, Fischer, Wilhelm

Publikováno v: Brain 139(4), 1106-1122 (2016). doi:10.1093/brain/aww004
Brain-A Journal of Neurology
Brain-A Journal of Neurology, Oxford University Press (OUP), 2016, 139 (4), pp.1106-1122. ⟨10.1093/brain/aww004⟩
Brain-A Journal of Neurology, 2016, 139 (4), pp.1106-1122. ⟨10.1093/brain/aww004⟩

International audience; Amyotrophic lateral sclerosis, the most common adult-onset motor neuron disease, leads to death within 3 to 5 years after onset. Beyond progressive motor impairment, patients with amyotrophic lateral sclerosis suffer from majo

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::2100cab1af8c6c87b161388fec439336
https://pubmed.ncbi.nlm.nih.gov/26984187