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6 results on '"Hesebeck-Brinckmann, Jasper"'

3. Effects of tofersen treatment in patients with SOD1-ALS in a “real-world” setting – a 12-month multicenter cohort study from the German early access program

Author

Wiesenfarth, Maximilian, Dorst, Johannes, Brenner, David, Elmas, Zeynep, Parlak, Özlem, Uzelac, Zeljko, Kandler, Katharina, Mayer, Kristina, Weiland, Ulrike, Herrmann, Christine, Schuster, Joachim, Freischmidt, Axel, Müller, Kathrin, Siebert, Reiner, Bachhuber, Franziska, Simak, Tatiana, Günther, Kornelia, Fröhlich, Elke, Knehr, Antje, Regensburger, Martin, German, Alexander, Petri, Susanne, Grosskreutz, Julian, Klopstock, Thomas, Reilich, Peter, Schöberl, Florian, Hagenacker, Tim, Weyen, Ute, Günther, René, Vidovic, Maximilian, Jentsch, Martin, Haarmeier, Thomas, Weydt, Patrick, Valkadinov, Ivan, Hesebeck-Brinckmann, Jasper, Conrad, Julian, Weishaupt, Jochen Hans, Schumann, Peggy, Körtvélyessy, Peter, Meyer, Thomas, Ruf, Wolfgang Philipp, Witzel, Simon, Senel, Makbule, Tumani, Hayrettin, and Ludolph, Albert Christian

Published
2024
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4. Secretion of Hepatitis C Virus Replication Intermediates Reduces Activation of Toll-Like Receptor 3 in Hepatocytes

Author

Grünvogel, Oliver, Colasanti, Ombretta, Lee, Ji-Young, Klöss, Volker, Belouzard, Sandrine, Reustle, Anna, Esser-Nobis, Katharina, Hesebeck-Brinckmann, Jasper, Mutz, Pascal, Hoffmann, Katrin, Mehrabi, Arianeb, Koschny, Ronald, Vondran, Florian W.R., Gotthardt, Daniel, Schnitzler, Paul, Neumann-Haefelin, Christoph, Thimme, Robert, Binder, Marco, Bartenschlager, Ralf, Dubuisson, Jean, Dalpke, Alexander H., and Lohmann, Volker

Published
2018
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6. Clinical and patient-reported outcomes and neurofilament response during tofersen treatment in SOD1-related ALS-A multicenter observational study over 18 months.

Author

Meyer T, Schumann P, Weydt P, Petri S, Weishaupt JH, Weyen U, Koch JC, Günther R, Regensburger M, Boentert M, Wiesenfarth M, Koc Y, Kolzarek F, Kettemann D, Norden J, Bernsen S, Elmas Z, Conrad J, Valkadinov I, Vidovic M, Dorst J, Ludolph AC, Hesebeck-Brinckmann J, Spittel S, Münch C, Maier A, and Körtvélyessy P

Subjects
Humans, Male, Female, Middle Aged, Aged, Treatment Outcome, Disease Progression, Adult, Oligonucleotides therapeutic use, Amyotrophic Lateral Sclerosis drug therapy, Amyotrophic Lateral Sclerosis genetics, Patient Reported Outcome Measures, Superoxide Dismutase-1 genetics, Neurofilament Proteins blood
Abstract

Introduction/aims: In amyotrophic lateral sclerosis (ALS) caused by SOD1 mutations (SOD1-ALS), tofersen received accelerated approval in the United States and is available via expanded access programs (EAP) outside the United States. This multicenter study investigates clinical and patient-reported outcomes (PRO) and serum neurofilament light chain (sNfL) during tofersen treatment in an EAP in Germany., Methods: Sixteen SOD1-ALS patients receiving tofersen for at least 6 months were analyzed. The ALS progression rate (ALS-PR), as measured by the monthly change of the ALS functional rating scale-revised (ALSFRS-R), slow vital capacity (SVC), and sNfL were investigated. PRO included the Measure Yourself Medical Outcome Profile (MYMOP2), Treatment Satisfaction Questionnaire for Medication (TSQM-9), and Net Promoter Score (NPS)., Results: Mean tofersen treatment was 11 months (6-18 months). ALS-PR showed a mean change of -0.2 (range 0 to -1.1) and relative reduction by 25%. Seven patients demonstrated increased ALSFRS-R. SVC was stable (mean 88%, range -15% to +28%). sNfL decreased in all patients except one heterozygous D91A-SOD1 mutation carrier (mean change of sNfL -58%, range -91 to +27%, p < .01). MYMOP2 indicated improved symptom severity (n = 10) or yet perception of partial response (n = 6). TSQM-9 showed high global treatment satisfaction (mean 83, SD 16) although the convenience of drug administration was modest (mean 50, SD 27). NPS revealed a very high recommendation rate for tofersen (NPS +80)., Discussion: Data from this EAP supported the clinical and sNfL response to tofersen in SOD1-ALS. PRO suggested a favorable patient perception of tofersen treatment in clinical practice., (© 2024 The Author(s). Muscle & Nerve published by Wiley Periodicals LLC.)

Published
2024
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