Patient-reported, psychosocial and health economic outcomes in mild to moderate Friedreich's ataxia: baseline results of the PROFA study
Year: 2025
Type: article
Language: en
Topic: Genetic Neurodegenerative Diseases
Authors and affiliations:
raw_author_name: Marcus Grobe-Einsler
raw_affiliation_strings: Center for Neurology, Department of Parkinson's Disease, Sleep and Movement Disorders, University Hospital Bonn, Bonn, Germany
Department of Neurology, Center for Movement Disorders and Neuromodulation, Medical Faculty, Heinrich-Heine University, Düsseldorf, Germany
German Center for Neurodegenerative Diseases, Bonn, Germany
raw_author_name: Stéphanie Borel
raw_affiliation_strings: Sorbonne Université, Paris Brain Institute (ICM - Institut du Cerveau), INSERM, CNRS, Assistance Publique-Hôpitaux de Paris (AP-HP), Paris, France
raw_author_name: Maresa Buchholz
raw_affiliation_strings: German Center for Neurodegenerative Diseases (DZNE), Site Rostock/Greifswald, Patient-reported Outcomes & Health Economics Research, Greifswald, Germany
raw_author_name: Sabrina Sayah
raw_affiliation_strings: Sorbonne Université, Paris Brain Institute (ICM - Institut du Cerveau), INSERM, CNRS, Assistance Publique-Hôpitaux de Paris (AP-HP), Paris, France
raw_author_name: Rania Hilab
raw_affiliation_strings: Sorbonne Université, Paris Brain Institute (ICM - Institut du Cerveau), INSERM, CNRS, Assistance Publique-Hôpitaux de Paris (AP-HP), Paris, France
raw_author_name: Lucie Pierron
raw_affiliation_strings: Sorbonne Université, Paris Brain Institute (ICM - Institut du Cerveau), INSERM, CNRS, Assistance Publique-Hôpitaux de Paris (AP-HP), Paris, France
raw_author_name: Audrey Iskandar
raw_affiliation_strings: German Center for Neurodegenerative Diseases (DZNE), Site Rostock/Greifswald, Patient-reported Outcomes & Health Economics Research, Greifswald, Germany
raw_author_name: Brittany Humphries
raw_affiliation_strings: Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, Ontario, Canada
raw_author_name: Claire Ewenczyk
raw_affiliation_strings: Sorbonne Université, Paris Brain Institute (ICM - Institut du Cerveau), INSERM, CNRS, Assistance Publique-Hôpitaux de Paris (AP-HP), Paris, France
raw_author_name: Anna Heinzmann
raw_affiliation_strings: Sorbonne Université, Paris Brain Institute (ICM - Institut du Cerveau), INSERM, CNRS, Assistance Publique-Hôpitaux de Paris (AP-HP), Paris, France
raw_author_name: Mariana Atencio
raw_affiliation_strings: Sorbonne Université, Paris Brain Institute (ICM - Institut du Cerveau), INSERM, CNRS, Assistance Publique-Hôpitaux de Paris (AP-HP), Paris, France
raw_author_name: Katrin Feldmann
raw_affiliation_strings: German Center for Neurodegenerative Diseases, Bonn, Germany
raw_author_name: Vivian Maas
raw_affiliation_strings: German Center for Neurodegenerative Diseases, Bonn, Germany
raw_author_name: Jennifer Faber
raw_affiliation_strings: Center for Neurology, Department of Parkinson's Disease, Sleep and Movement Disorders, University Hospital Bonn, Bonn, Germany
Department of Neuroradiology, University Hospital Bonn, Germany
German Center for Neurodegenerative Diseases, Bonn, Germany
raw_author_name: Sylvia Boesch
raw_affiliation_strings: Centre for Rare Movement disorders Innsbruck, Department of Neurology, Medical University Innsbruck, Innsbruck, Austria
raw_author_name: Elisabetta Indelicato
raw_affiliation_strings: Centre for Rare Movement disorders Innsbruck, Department of Neurology, Medical University Innsbruck, Innsbruck, Austria
raw_author_name: Kathrin Reetz
raw_affiliation_strings: Department of Neurology, RWTH Aachen University, Aachen, Germany
raw_author_name: Jörg B. Schulz
raw_affiliation_strings: Department of Neurology, RWTH Aachen University, Aachen, Germany
raw_author_name: Almut T. Bischoff
raw_affiliation_strings: Friedrich-baur-Institute at the Department of Neurology, LMU University Hospital, Ludwig-Maximilian-Universität (LMU) Munich, Germany
German Center for Neurodegenerative Diseases, Munich, Germany
raw_author_name: Thomas Klopstock
raw_affiliation_strings: Friedrich-baur-Institute at the Department of Neurology, LMU University Hospital, Ludwig-Maximilian-Universität (LMU) Munich, Germany
German Center for Neurodegenerative Diseases, Munich, Germany
Munich Cluster for Systems Neurology (SyNergy), Munich, Germany
raw_author_name: Ludger Schöls
raw_affiliation_strings: Department of Neurology and Hertie Institute for Clinical Brain Research, University of Tuebingen, Germany
German Center for Neurodegenerative Diseases (DZNE), Site Tübingen, Germany
raw_author_name: Martina Minnerop
raw_affiliation_strings: Department of Neurology, Center for Movement Disorders and Neuromodulation, Medical Faculty, Heinrich-Heine University, Düsseldorf, Germany
Institute of Clinical Neuroscience and Medical Psychology, Medical Faculty & University Hospital Düsseldorf, Heinrich Heine University Düsseldorf, Düsseldorf, Germany
Institute of Neuroscience and Medicine (INM-1), Research Centre Jülich, Jülich, Germany
raw_author_name: Dagmar Timmann
raw_affiliation_strings: Department of Neurology and Center for Translational Neuro- and Behavioral Sciences (C-TNBS), Essen University Hospital, University of Duisburg-Essen, Essen, Germany
Institute of Clinical Neuroscience and Medical Psychology, Medical Faculty & University Hospital Düsseldorf, Heinrich Heine University Düsseldorf, Düsseldorf, Germany
raw_author_name: Elin H. Davies
raw_affiliation_strings: Aparito Ltd a Wholly Owned Subsidiary of Eli Lilly and Company, 11-12 Gwenfro, Wrexham Technology Park, Wrexham, Wales, United Kingdom
raw_author_name: Thomas Klockgether
raw_affiliation_strings: Center for Neurology, Department of Parkinson's Disease, Sleep and Movement Disorders, University Hospital Bonn, Bonn, Germany
German Center for Neurodegenerative Diseases, Bonn, Germany
raw_author_name: Alexandra Durr
raw_affiliation_strings: Sorbonne Université, Paris Brain Institute (ICM - Institut du Cerveau), INSERM, CNRS, Assistance Publique-Hôpitaux de Paris (AP-HP), Paris, France
raw_author_name: Feng Xie
raw_affiliation_strings: Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, Ontario, Canada
raw_author_name: Bernhard Michalowsky
raw_affiliation_strings: Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, Ontario, Canada
German Center for Neurodegenerative Diseases (DZNE), Site Rostock/Greifswald, Patient-reported Outcomes & Health Economics Research, Greifswald, Germany