Jose-Alberto Palma1, Florian Krismer2, Wassilios G Meissner3,4,5,6, Mechteld Kuijpers1, Patricio Millar-Vernetti1, Miguel A Perez1, Alessandra Fanciulli2, Lucy Norcliffe-Kaufmann1, Pam Bower7, Gregor K Wenning2, Horacio Kaufmann1. 1. Department of Neurology, Dysautonomia Center New York University School of Medicine New York New York USA. 2. Department of Neurology Innsbruck Medical University Innsbruck Austria. 3. Centre Hospitalier Universitaire, Bordeaux, Service de Neurologie des Maladies Neurodégénératives Bordeaux France. 4. Department of Neurology University of Bordeaux Bordeaux France. 5. Department of Medicine University of Otago Christchurch New Zealand. 6. New Zealand Brain Research Institute Christchurch New Zealand. 7. Multiple System Atrophy Coalition McLean Virginia USA.
Abstract
Background: The Global Multiple System Atrophy Registry (GLOMSAR) was established in 2013. It is an online patient-reported contact registry open and free that relies on self-reported diagnosis by the patient or caregiver. Objectives: To report the demographics of patients enrolled in GLOMSAR and the results of an ancillary online symptom questionnaire. Methods: Patients enrolled in GLOMSAR were invited to complete a custom-designed online questionnaire about disease onset and symptom prevalence. Results: At the time of writing, there were 1083 participants in GLOMSAR, of which 33% (365) completed the questionnaire. The onset and frequency of most symptoms was similar to those reported in the literature in physician-reported studies. Some were understudied or not typically associated with multiple system atrophy (MSA), including reduced female sexual sensation (55%), forgetfulness (60%), pseudobulbar affect (37%), olfactory changes (36%), and visual hallucinations (21%). Conclusions: Patient-reported studies and ancillary online questionnaires are valid, underused research tools useful to advance our knowledge on understudied MSA features and highlight the patients' voice.
Background: The Global Multiple System Atrophy Registry (GLOMSAR) was established in 2013. It is an online patient-reported contact registry open and free that relies on self-reported diagnosis by the patient or caregiver. Objectives: To report the demographics of patients enrolled in GLOMSAR and the results of an ancillary online symptom questionnaire. Methods: Patients enrolled in GLOMSAR were invited to complete a custom-designed online questionnaire about disease onset and symptom prevalence. Results: At the time of writing, there were 1083 participants in GLOMSAR, of which 33% (365) completed the questionnaire. The onset and frequency of most symptoms was similar to those reported in the literature in physician-reported studies. Some were understudied or not typically associated with multiple system atrophy (MSA), including reduced female sexual sensation (55%), forgetfulness (60%), pseudobulbar affect (37%), olfactory changes (36%), and visual hallucinations (21%). Conclusions: Patient-reported studies and ancillary online questionnaires are valid, underused research tools useful to advance our knowledge on understudied MSA features and highlight the patients' voice.
Authors: Iva Stankovic; Florian Krismer; Aleksandar Jesic; Angelo Antonini; Thomas Benke; Richard G Brown; David J Burn; Janice L Holton; Horacio Kaufmann; Vladimir S Kostic; Helen Ling; Wassilios G Meissner; Werner Poewe; Marija Semnic; Klaus Seppi; Atsushi Takeda; Daniel Weintraub; Gregor K Wenning Journal: Mov Disord Date: 2014-04-18 Impact factor: 10.338
Authors: David S Goldstein; Courtney Holmes; Oladi Bentho; Takuya Sato; Jeffrey Moak; Yehonatan Sharabi; Richard Imrich; Shielah Conant; Basil A Eldadah Journal: Parkinsonism Relat Disord Date: 2008-03-05 Impact factor: 4.891
Authors: Gregor K Wenning; Felix Geser; Florian Krismer; Klaus Seppi; Susanne Duerr; Sylvia Boesch; Martin Köllensperger; Georg Goebel; Karl P Pfeiffer; Paolo Barone; Maria Teresa Pellecchia; Niall P Quinn; Vasiliki Koukouni; Clare J Fowler; Anette Schrag; Christopher J Mathias; Nir Giladi; Tanya Gurevich; Erik Dupont; Karen Ostergaard; Christer F Nilsson; Håkan Widner; Wolfgang Oertel; Karla Maria Eggert; Alberto Albanese; Francesca del Sorbo; Eduardo Tolosa; Adriana Cardozo; Günther Deuschl; Helge Hellriegel; Thomas Klockgether; Richard Dodel; Cristina Sampaio; Miguel Coelho; Ruth Djaldetti; Eldad Melamed; Thomas Gasser; Christoph Kamm; Giuseppe Meco; Carlo Colosimo; Olivier Rascol; Wassilios G Meissner; François Tison; Werner Poewe Journal: Lancet Neurol Date: 2013-02-05 Impact factor: 44.182